by Libby Hill, Speech and Language Therapist
Pathological Demand Avoidance, or PDA, is currently thought to be a profile on the autistic spectrum. A PDA profile of autism means that a child meets the criteria for a diagnosis of autism, however in addition to the characteristics associated with autism, they have an extreme need for control. This need for control is often anxiety-related and drives them to avoid everyday demands and expectations. We all have times when we want to avoid the demands put on us, but we will readily do the things that we enjoy and want to do. A key part of PDA is that it can include avoidance of things that the child wants to do or really enjoys. Individuals with PDA can appear very sociable and use this sociability to help avoid the demands and expectations of others, for example using distraction techniques and giving excuses.
We have completed a survey to get the views of 200 parents of children with PDA, which will be made into a book to inform others (to be published in 2021). The interviews made harrowing reading and took my appreciation of families in these circumstances to a whole new level. The phrase ‘parenting is the hardest job in the world’ could have been designed specifically for parents of children with PDA.
Each child with PDA will be different, but commonly they do not respond well to conventional parenting, teaching or support strategies. Even though PDA is thought to be a profile on the autistic spectrum, many parents find that some of the recommended strategies used with autistic children are not effective for their child. What’s more, any management strategies will need to be individualised for your child and they won’t work all the time!
The following are some common themes from the parents interviewed about supporting children with PDA:
- Do your research. It is important to develop your understanding of the complex phenomenon that is PDA, as only once you comprehend the general ideas will you be able to get to know how it affects your child.
- Get support. Particularly from other parents in the same position, by looking for Facebook pages or local ASD/PDA parent support groups.
- Develop a thick skin. This is important for two main reasons:
- Firstly, your child is likely to call you more names than you have ever been called before and you need to keep in mind that this is not personal. They may tell you that they hate you, you are evil, ugly, or that you should kill yourself, and they may also be physically violent. This is because you are their ‘safe’ person with whom they can completely be themselves with.
- You will need to deflect criticism of your parenting. This may come from well-meaning relatives who will tell you how you should be dealing with your child. Many children with PDA develop amazing masking skills and may only show difficult behaviour away from home at the point at which they can no longer do this, e.g. breaking point. This means that many parents are incorrectly blamed for their child’s behaviour.
The PDA Society Website has lots of specific advice for supporting a child with PDA and they have developed a PANDA mnemonic of top tips:
P = Pick Battles
Only have rules you really need and keep these to a minimum. Give your child choices and control and be prepared for negotiation. Think about what is really important to you and the situation, then look at the bigger picture and make allowances to enable that to happen, e.g. if you need them to eat, does it matter if they will only eat in their room?
A = Anxiety Management
There's a saying that ‘the children who need the most help and support, ask for it in the least useful way’ and this could have been written for children with PDA. We need to try and recognise the underlying anxiety and/or sensory challenges behind negative behaviours, for example viewing challenging behaviour as a panic attack. This means that we are better able to handle it and support children through it. Dealing with a child who can't do something is very different to how we deal with a child who won't do something. With PDA it will always look like they are refusing to do the task, but the reality is, they can’t, so we need to support them and move on.
N = Negotiation and Collaboration
We tend not to have to think about building relationships with our children, it’s just something that happens. However, good relationships are essential for supporting children with PDA. Your child needs to see fairness and trust as the centre of your relationship, as it is a lack of trust or feeling safe which drives the anxiety. There is a school of thought that sees PDA as part of faulty neuroreception, i.e. how children read everyday situations and threats in order to respond appropriately. It is important to try and remain calm, despite what might be happening, and proactively collaborate and negotiate to solve the challenge.
D = Disguise and Manage Demands
Life is full of demands we can’t control. I often think of the many demands around a family’s morning routine: wake up, get up, get dressed, clean teeth, brush hair, eat breakfast, coat on etc. For children with PDA, it works better if you try to remove the direct demands from the language. I have had to re-think the words that I use to get children to do things that I want them to do, so phrases such as, ‘I wonder if ?’, ‘shall we…?’ and words such as ‘may’, ‘could’, ‘ would you like?’ ‘how about…?’ are much more effective than any mention of ‘must’, ‘need’ or ‘have to.’ I try to avoid, ‘No,’ wherever possible but of course there are times when it might be totally necessary to use the word, e.g. where any danger is involved. Phil Christie’s book ‘Understanding PDA in children’ looks at scaling back demands when children are at their most anxious to just 3 rules: don’t hurt anyone, don’t hurt yourself and don’t damage anything.
A = Adaptation
Be prepared to be flexible yet plan ahead. That sounds like a contradiction but as Steph Curtis from Steph’s ‘two girls blog’ says ‘Whilst on the one hand flexibility is required, some thought about what may happen and planning for different scenarios is also key. I do not tend to go anywhere without a Plan A, B and C - and even Z in some cases! The chance to escape before it all gets too much is important, so I always make sure there is a quiet space, or easy access to an exit.’ Using humour, distraction, novelty and roleplay can be successful strategies.
While PDA is relatively uncommon, it is essential to recognise and understand the distinct profile because it has implications for the way individuals are best supported and managed both at home and elsewhere. It is important to remember that we are still at a very early stage in our understanding. There is continuing debate and research over the exact nature of the profile and how it is described, but we do know that for every family, the battles will be different. For every family with a child with PDA, the scope of the battles is also likely to change over time.
For further information and advice about PDA visit:
PDA Society https://www.pdasociety.org.uk/
A reflective journey; a practitioner’s guide to the low arousal approach by Professor Andrew McDonnell from Studio III
Steph Curtis’ blog https://www.stephstwogirls.co.uk/
Understanding PDA in children: a guide for parents, teachers, and other professionals by Phil Christie et al
National Autistic Society https://www.autism.org.uk/about/what-is/pda.aspx
Libby Hill is an award-winning Speech and Language Therapist working as clinical director at Small Talk. Based in Derbyshire, she sees children from all over the UK. She is a member of the PDA Professionals group and the PDA Research group. www.smalltalk-ltd.co.uk