Introduction
This position statement has been coproduced through the ßÙßÇÂþ» All Age Autism Strategy 2021 to 2026. It has been written collaboratively by, experts by experience, children and young people, parent carers of children and young people with a Pathological Demand Avoidance (PDA) profile and with a range of professionals.
The aims of this position statement are to:
- Develop and validate a shared understanding of PDA
- Raise awareness of PDA
- Provide insights into the lived experience of people with a PDA profile
- Improve the experiences and lives of autistic people with a PDA Profile
Autistic people with a PDA profile often have inconsistent and negative experiences due to a lack of shared understanding of how to meet their needs.
The purpose of this position statement is to recognise and validate that autistic people with a PDA profile live and work in ßÙßÇÂþ».
The aspiration of this position statement is to achieve validation of PDA throughout the service system and improve the experiences of autistic people and their families.
This position statement has been endorsed by the Joint Education and Commissioning Board and the ßÙßÇÂþ» and Borders Partnership NHS Foundation Trust Quality Management Group.
Author Eliza Fricker has given us permission to use some of her illustrations as part of ßÙßÇÂþ» PDA Position Statement. These will be added at a future date. You can see Eliza's illustrations and other work on PDA on
We know that autism is dimensional – it involves a complex and overlapping pattern of strengths, differences and challenges that present differently from one individual to another and in the same individual over time or in different environments. A cluster of traits can be called a presentation or a profile – in some cases this can be quite different from what some people think autism ‘looks like’.
This can lead to presentations in some people – including autistic women and girls, and PDA individuals – being missed altogether, misunderstood or misdiagnosed, which can in turn lead to poor outcomes.
Quote from Identifying PDA - PDA Society
What is PDA?
Pathological Demand Avoidance, also referred to as PDA is driven by anxiety and the need to be autonomous.
It is characterised by a continued, persistent and extreme resistance or ’avoidance’ to demands of any kind including ordinary demands of life. This includes avoiding things that autistic people want to do and/or need to do as well as avoiding or resisting demands from other people. This avoidance and resistance have a significant impact on people’s daily living and can affect the ability to access education, health and social care support.
With my daughter it really is can’t not won’t – even things she absolutely loves can become impossible to access. She often says ‘I really want to but I just can’t.
Parent Carer
Demands can include:
- Laws
- Menus
- Choices
- Desires
- Needs
- Requests
- Social rules
- Expectations
- Questions
PDA is a response to everyday demands. Every person with a PDA profile will have different needs and different lived experiences with varying responses to a variety of demands.
When faced with demands, PDA can also look like a lot of different things, such as:
- Excuses
- Procrastination
- Daydreaming
- Shutdown pr meltdown
- Panic
- Fight, flight, freeze and fawning responses
It is important to remember that PDA is real, it is not ‘naughty’ or rude behaviour, and it can impact on children and young people's lives and their parent carers. Visit the to find out more.
I would say anything really can be seen as a demand like you don’t realise you are doing it. PDA causes a huge amount of anxiety which shows in many different ways like outburst and it’s like a fight or flight thing, and anything can be seen as a demand
Young person with a PDA profile
My son tends to resist adult led activities, perceiving instructions as demands.
Parent Carer
Even the demands of eating and drinking can become overwhelming to a PDAer.
Parent Carer
Identification and assessment of a PDA profile
It is essential for parent carers to be viewed as the experts on their children.
The PDA profile can sometimes be difficult to identify and understand and it’s not uncommon for it to be missed, misunderstood, or misdiagnosed, which may lead to poor outcomes for autistic children, young people, and adults. With the right strategies in place, children and young people can thrive. This highlights the importance of early identification and acceptance.
PDA does not appear as a diagnostic condition in nationally and internationally recognised diagnostic manuals such as DSM-V or ICD-11. PDA is a profile of behaviours found in some autistic people. This means that a PDA profile can only be identified within or following an autism diagnosis. It is widely recognised as a profile of autism that affects the way a person experiences and responds to everyday demands. The presentation of a PDA profile will change throughout the life of an individual.
If a PDA profile is identified during an autism assessment it should be described in the diagnosis paperwork. would always use a needs led approach to do this. It is important to emphasise that formal identification of PDA should not be required to access specialist support in ßÙßÇÂþ». There is an expectation that PDA friendly support must be offered as part of the ordinarily available provision across all services.
There are times when support needs will exceed the ordinarily available offer. In these circumstances the right level of support should be sought at the earliest opportunity.
A PDA profile can be ‘extrovert’ where demand avoidance is quite overt, or it may be ‘introvert’ where demands may be resisted more quietly, and difficulties are masked.
How to support autistic people with a PDA profile
All those supporting autistic individuals need to be mindful that autism and a PDA profile can coexist with other difficulties which can manifest as distress including emotionally based school non-attendance (EBSNA).
85% said their child had experience emotionally based school avoidance/anxiety at some point in their lives, and 74% have experienced it in the last year.
Quote taken from In Our Words - The PDA Society
Traditional autism strategies tend not to be supportive for PDA people and traditional parenting and teaching strategies can increase anxiety for PDA children.
Recently my daughter said that when someone asks her to do something it makes it even more difficult. I wanted to test this out, so I stopped asking her to have a shower and after a while she started doing it herself – this for me was a huge insight into her and how to support her.
Parent Carer
Over a number of visits, I have observed a school reducing demands by offering real choices to a child. They have created a safe space both inside and outside of the classroom for them and have alternative tasks available in trays if he does not want to complete the class learning. As a result, the child feels safe in school and is now accessing some learning in the classroom.
Autism Outreach for Schools Teacher
Reasonable adjustments and support should be based on the recognition of needs.
Everyone with PDA is unique and different therefore approaches will differ, however building trust and connection is key. Kindness, compassion and genuine interest is essential.
Relationships are a critical life source for children and young people with a PDA profile – my daughter thrives when she has a trusted person who has a genuine interest in her. These relationships take a long time to build but the impact when they work are invaluable.
Parent Carer
PDA children are drawn to ‘natural’ people those who are relaxed and laid back with children, as well as those who demonstrate that they like and respect them.
Eliza Fricker - author and advocate
PDA is anxiety driven, when anxiety is lowered – demands can be manageable – PDA doesn’t disappear, but children can thrive with the right support. An autistic child, young person or adult with a PDA profile needs a flexible, creative, non-confrontational, personalised approach. The most important thing is that the person is understood and the world around them understands them. It is vital that to understand their need to feel autonomous and that we do not approach this in a way that seeks to take that autonomy away.
Low arousal approaches, which keep anxiety to a minimum and provide a sense of autonomy, are good starting points when thinking about what works for PDA. A partnership based on trust, flexibility, collaboration, careful use of language and balancing of demands works best.
An individual with PDA must feel autonomous, if this taken away their anxiety will increase, and their demand tolerance decrease. Offering genuine choices increases autonomy.
The antidote to anxiety is trust.
Laura Kerbey, autism & education consultant and author
My daughter needs autonomy to feel safe – this is how she survives and when a threat to her autonomy occurs, she will do everything she can to feel safe again. Autonomy doesn’t mean there are no rules or boundaries, there are, but they are made in collaboration with my daughter so that she feels safe and in control.
Parent Carer
Collaborative approaches are really important between adults with a PDA child whether this is parents, extended family or professionals.
Eliza Fricker - author and advocate
Close
This PDA position statement was made possible by a broad collaboration between autistic people who have a PDA profile, their parents and carers, and committed partners across ßÙßÇÂþ». These partners include;
- ßÙßÇÂþ»
- Dr Phil Ferreira-Lay, Associate Medical Director Children and Young People's Services (CYPS) Division, Consultant Child Psychiatrist and Medical Lead for CYPS-ND (Neurodevelopmental) Teams
- Laura Kerbey -
- Eliza Fricker - author and advocate, Missing the Mark
- All Age Autism Strategy Parent Carer Reference Group
People’s tolerance of demands fluctuates from day to day. Our job is to build a really strong relationship so that we are able to sense, almost intuitively, whether at any given time they have the capacity for more demands or not.
Clare Truman, Spectrum Space