If you have a young person whose behaviour you find hard to understand, you might want to consider PDA, writes Sally Russell
Autism and autism spectrum disorder (ASD) are widely recognised terms, but our understanding of what the conditions mean in practice is still very much evolving.
Those with relatively unusual and complex presentations of autism, such as pathological demand avoidance (PDA), are at particular risk of being misunderstood. This is leading to extremely poor outcomes for this group of autistic people.
For outcomes to improve, PDA needs to be on everyone’s radar and taken into consideration, especially with children and young adults whose behaviour may be hard to understand.
What is PDA?
PDA is a profile on the autism spectrum. Whilst individuals with a PDA profile share similar difficulties to others with ASD – social communications and interaction difficulties, sensory challenges and some restrictive/repetitive behaviours – their central difficulty is an anxiety-driven need to be in control and avoid everyday demands and expectations to an extreme extent.
The National Autistic Society describes the distinctive features of a demand avoidant profile as:
- resisting and avoiding the ordinary demands of life
- using social strategies as part of avoidance (for example, distracting or giving excuses)
- appearing sociable, but lacking understanding
- experiencing excessive mood swings and impulsivity
- displaying obsessive behaviour that is often focused on other people.
People with a PDA profile are at particular risk of being misunderstood, as a recent survey by the PDA Society (Being Misunderstood, 2018), the largest on the topic to date, highlighted:
- 70 per cent are not in school or regularly struggle to attend – this is school refusal at much higher levels than you would expect to see in the ASD population as a whole; the school environment is especially problematic for children with PDA, with even specialist ASD schools unable to help; some examples of best practice were identified and once there was proper understanding of need and suitable adjustments were made, outcomes improved
- 70 per cent have found a lack of understanding/acceptance a barrier to getting support – the validity of PDA as a condition is still debated and so the usual lack of resources and professional training are exacerbated by feelings of professional challenge and unwillingness to engage; because PDA is uncommon, there is little experience amongst front-line professionals and because similar behaviours can be seen in other conditions, the exact nature of the presentation can be hard to tease out
- 78 per cent have difficulties with daily tasks – unlike oppositional defiance disorder (ODD), a condition PDA can sometimes be mistaken for, it is the everyday tasks that those with PDA struggle with, from packing a bag to washing, dressing and eating; demands are ever-present and can take many forms; as well as the more obvious demands (like being asked or told to do something) there are things like expectations, thoughts, desires, peer pressure, uncertainty, transitions, special occasions and praise
- 49 per cent of the young people whose experiences were covered in this survey and who had a diagnosis had one that includes mention of a PDA profile – terminology that includes a demand avoidant profile is being widely used in some parts of the country, although accessing an assessment for the PDA aspects of ASD is not only a postcode lottery but can vary from one clinician to another within the same local authority; the Being Misunderstood report calls for local leaders to adopt a position statement on the PDA profile to clear up the confusion over assessments and service availability that currently exists
- conventional ASD approaches hinder rather than help – this is the single most important point about living and working with people who have a PDA profile; the support strategies are completely different; using the incorrect strategies, including those recommended for other profiles on the autism spectrum, is not only ineffective but also counter-productive and even harmful.
These stark statistics should be a wake-up call to everyone working in the SEN sector, and cause everyone to ask themselves whether PDA might be the answer to children whose behaviour may be hard to understand or pigeon hole.
Once the underlying cause of behaviours is understood, it becomes easier to think about how best to help. The PDA profile turns all teaching, parenting and caring norms upside down; conventional techniques such as praise, boundaries and rewards and consequences fail, whereas negotiation, collaboration, minimal ground rules and careful use of language help.
People with a PDA profile are highly anxious and unable to tolerate uncertainty, so strategies that keep anxiety to a minimum and provide a sense of control are good starting points. Always plan ahead, allow plenty of time, pick battles carefully, remain calm and have a plan B up your sleeve.
Constant fine-tuning of the balance between the demands being placed on the person with PDA and their ability to tolerate demands is required; there are times when demands need to be minimised and others where they can be increased. Techniques for making demands more indirect – including rephrasing requests, providing choices, depersonalising, distracting, using humour and role play – are invaluable.
It’s also very important not to lose sight of the positives. The PDA Society’s survey asked what the greatest rewards of living and working with a person with PDA were. The vast majority of respondents shared details of the many positive personal qualities their child exhibited, including intelligence, humour, creativity, talents, individuality, resilience and determination.
With greater awareness and acceptance of PDA it is to be hoped that a “needs-based and outcomes-focussed” approach will become the norm for this most misunderstood group of autistic people, and not the exception as it so often is today.
A school for Finley
Finley has a recent autism diagnosis and both his family and school believe he fits the PDA profile perfectly. He responds to PDA strategies and “typical” autism strategies often result in severe difficulties.
Finley struggled with school from the outset and was first excluded in January of Year 1. Attempts to reintroduce Finley to school, even on a part-time timetable, failed and he was taught at home for two hours a day by a teacher from a pupil referral unit.
Following multi-agency meetings and a lengthy, bespoke transition process, Finley started at a special school in Year 4. Some of the approaches that work well (though none are guaranteed and Finley still struggles at some point every day) include:
- providing a safe base to be in when he choses
- using his current special interests to build relationships
- play-based learning
- using surprises or novel experiences to gain interest
- having trusted adults around or nearby at all times
- indirect questions or requests
- providing Finley with a way out of difficult situations
- adults who can think quickly and adapt on the go.
His school says that the most crucial aspects of the journey were a commitment to open and honest dialogue with Finley’s family and the full support of the school’s senior leadership team.
Sally Russell OBE was a Co-Founder of Netmums and Founding Chair of the Institute of Health Visiting. She is a trustee of the PDA Society and the author of the report discussed in this article, Being Misunderstood: Experiences of the Pathological Demand Avoidance Profile of ASD: