From the National Autistic Society - see the original here.
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 link to some useful resources for parents and educational professionals when supporting people with a PDA profile, and 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 child’s 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. This is usually by a multi-disciplinary team made up of a combination of professionals including:
clinical and educational psychologists
speech and language therapists
To begin the assessment process, ask your GP for a referral to the local appropriate pathway to begin this process, this may be the community paediatric team (if for your child) or a team who specialises in neurodevelopmental assessments that include autism.
Getting a formal diagnosis can mean access to support, but having a specific profile of your child’s 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, education, work – and should be regularly reviewed as your child’s 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 child’s needs at that time of life.
Approaches and strategies
Many parents find that some of the recommended strategies used with autistic children are not effective for their child with a PDA profile. These may therefore need adapting.
When supporting a person with a PDA profile it’s important to understand that they are not deliberately choosing to oppose you – they are having difficulty adapting and overcoming their need to be in control of their environment. Having the right support may therefore mean that their trust and self-confidence grows, and with it their ability to cope more flexibly with the everyday demands of life.
Find out more information about approaches and strategies for parents and families.
One of the most important reasons for distinguishing this demand avoidant profile from other conditions and autism profiles is to ensure that the child is supported by the right educational approach.
People with this profile don't usually respond to structure and routine. An indirect style of negotiation will mean they feel more in control of their learning and consequently less anxious.
For parents with adult children
There are currently no formal guidelines for adults with a PDA profile but the section below gives some personal insight and experience.
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
However, there is generally no consensus on:
whether PDA is or is not a specific subtype of autism
There is a need for more research in this area as the existing research is very limited.
Personal and professional insights
Further information and support
- PDA Society
- Elisabeth Newson Centre
- Autism Education Trust
- Robert Ogden School
- Lorna Wing Centre
- Autism Associates
Useful research references
- Egan et al (2018) The Measurement of Adult Pathological Demand Avoidance Traits
- Eaton and Banting (2012) Adult diagnosis of pathological demand avoidance – subsequent care planning
- Gillberg et al (2015) Extreme (“pathological”) demand avoidance in autism: a general population study in the Faroe Islands
- Green et al (2018) Pathological demand avoidance: symptoms but not a syndrome
- Lyle and Leatherland (2018) Preventing school exclusion: a case study of a primary aged autistic child with ADHD and a PDA profile
- Newson et al (2003) Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders
- O’Nions et al (2014) Pathological demand avoidance: exploring the behavioural profile
- O’Nions et al (2014) Development of the ‘Extreme Demand Avoidance Questionnaire’ (EDA‐Q): preliminary observations on a trait measure for Pathological Demand Avoidance
- O’Nions et al (2016) Identifying features of ‘pathological demand avoidance’ using the Diagnostic Interview for Social and Communication Disorders (DISCO)
- O’Nions et al (2017) Dimensions of difficulty in children reported to have an autism spectrum diagnosis and features of extreme/‘pathological’ demand avoidance
- O’Nions et al (2018) Demand avoidance is not necessarily defiance
- Reilly et al (2014) Pathological Demand Avoidance in a population-based cohort of children with epilepsy: four case studies
- Summerhill and Collett (2018) Developing a multi-agency assessment pathway for children and young people thought to have a Pathological Demand Avoidance profile.