Since blogging about ADHD in children, I have come across so many other comorbidities such as ASD, ODD (Oppositional Defiance Disorder), Anxiety, RSD (Rejection Sensitive Dysphoria) and here is yet another one, PDA (Pathological Demand Avoidance). PDA is widely understood to be on the autistic spectrum or ASD as it is now called. As I have learnt ASD and ADHD are also closely linked. My daughter has been diagnosed with ADHD and ODD, and I work with children who have ASD and PDA, so I was really interested in the difference between ODD and Pathological Demand Avoidance in children.
What is Pathological Demand Avoidance?
PDA was first noted by a child psychologist, Prof Elizabeth Newson who saw that many children who came to her were, as she described, atypical autistic children. So, whilst the children had the autistic traits of social communication and interaction difficulties along with sensory issues, they also showed extreme avoidance of everyday demands and an anxiety-driven need to be in control. Many everyday demands are avoided simply because they are deemed as demands. The demand is seen as an expectation that increases anxiety and panic. PDA is classed as a developmental disorder.
*Direct demands are seen as rules, expectations, instructions etc whilst indirect are more perceived expectations, feeling hungry or thirsty, and uncertainty.
Common Behaviours of Pathological Demand Avoidance in Children
This resistance to everyday demands may show as:
- Needing to have the last word.
- Changing the topic of conversation
- Complaining of a physical injury that prevents them from doing something
- Physical outbursts/meltdowns
- Mood swings
- Comfortable in a fantasy world
- Combative/ Conflict with their siblings
- School refusal
- Inability to respond to typical parenting strategies.
Autistic children, as with children with ADHD, tend to dislike transitioning from activity to activity, especially if it’s moving on to something that they have no interest in. PDA however, is avoiding everyday demands that they may even like. It’s an anxiety-driven control. If the above behaviours don’t combat avoiding the demand then a meltdown, like a panic attack will occur, very rapidly in most cases.
What does Pathological Demand Avoidance feel like?
“I like to describe the experience of being under a demand as similar to having claustrophobia. The anxiety keeps rising steadily until it becomes a non-negotiable, panic-driven need to flee from the source of the demand – Tony
“It’s like a great big whoosh of NO!”
“Although I’m acting angry what I’m feeling is terror, and afterwards I don’t remember what I’ve done”
“PDA is like trying to face your phobias every waking moment. For me, it’s like being in a malfunctioning robot. Every button I press has an opposite reaction to my intentions”
Taken from PDA Society
Is it ODD or PDA?
Pathological Demand Avoidance in children can appear to be very similar to ODD due to how they present externally. However, the best description I have found to explain the differences is won’t versus can’t. ODD is a wilful choice to disobey whereas PDA is a complete inability to obey the demand. Children with PDA have an anxiety-driven need to be in control.
PDA is not a choice and is lifelong.
Diagnosing Pathological Demand Avoidance in Children
PDA can be diagnosed in children as young as pre-school, but as we know with our children, it is often years later. Children with PDA and Autism can actually mask quite well in school. They can appear to be more social or blend in by copying other children but not really understanding the context.
Signs of PDA in early childhood may include, but not restricted to; delayed developmental milestones, resistance or avoidance of everyday activities, can be socially manipulative to avoid certain situations, reward, praise, consequences may have no effect, can be very comfortable in role play or fantasy play to the point they may lose touch with reality, have obsessive behaviours, can appear sociable (contrary to ASD) but do not really identify with other children.
A healthcare professional such as a paediatrician or child psychologist can diagnose PDA. From reading about PDA, do try and find someone who specialises in this or is at least knowledgeable about PDA. It is still a relatively new diagnosis and therefore can lack a full understanding. Diagnosis of PDA can be missed because, like ADHD, the child can mask, present differently, be blamed on bad parenting, or even be misdiagnosed e.g., ODD or CD (Conduct Disorder). The reason it is important to distinguish whether your child has ODD or PDA is that they require different strategies to help them.
How to help your child with PDA
Firm boundaries, short direct questions, rewards, star charts, and praise can all often have the reverse effect on children with PDA. For example, praise can cause anxiety as the child then believes they will always have to do well and repeat what they did. It’s just too much pressure for them. So, what can you do?
- Pick your battles – this is so important. This will require some reflection on your part too! What really matters to you and what could you let slide? You are not parenting a neurotypical child so don’t stress if things don’t go the way you had hoped! I always thought I’d be like the Brady Bunch; we are more the Addams family!
- Be flexible and negotiate – collaborate with your child, and where possible let them plan out things so they feel in control. You have to set certain, essential, boundaries but use them as guides, not rigorous, set in stone.
- Remain calm and empathetic – yes this can be hard! We are only human and we get tired too, but a little bit more patience means less likelihood of a full-blown meltdown that could go on for hours! Listen and validate your child. ‘I know you hate the dentist, I did too, but it’ll be over quickly and done for another year!”
- Doing things together – again I know you don’t want to always have to unload the dishwasher, tidy their rooms etc if that is something you want them to independently do, or because that’s what your friend’s kids now do at this age. But, isn’t it better to do it ad a shared demand and get it done?
- Plan ahead and monitor – I think this is true of all our neurodiverse children. You anticipate what might occur on this trip, day, playdate, shopping trip, or holiday! I know which parts are tricky for my daughter and without pointing out to her that this is a difficult bit coming up, I observe and try to scale back whatever the demand is until I feel she is ready, and her anxiety has calmed enough to complete it.
- Praise and Rewards – As mentioned, these can feel like pressure to a child with PDA. An expectation of the behaviour, or whatever it was, to be always repeated. Instead, try to say things like “Well done for writing/drawing that” rather than “What a great piece of work” The emphasis is on the trying rather than the outcome. Also allowing your child to ‘overhear’ you telling someone else about how amazing they did is a great way to praise them.
- Using indirect language – Instead of saying ‘Get your coat and shoes on and get in the car’ try ‘I’ll race you!’. I use to do this for my son with ADHD to get him ready in the morning. We’d have a race to get dressed. Another good one is ‘Can you show me’, my kids love being the intelligent ones and showing me how old I am! If your child is young you can try talking through their favourite toy. “Dolly really wants to go out now”.
- Use humour – this is my favourite and has always been a winner in this house. I understand it doesn’t work for all. Especially if your child is very literal. But humour is a great distractor and in turn, it can de-escalate a tricky situation,
Strategies schools can use for PDA
A child with PDA can really struggle in school. It is literally a minefield of demands leading to high anxiety. Those children who mask in school, will come home and have a mighty meltdown which is impossible for all involved to live with. School refusal is not unusual.
Finding an understanding school is vital, as with any hidden disability. Many parents of children with PDA have had to home-school their children due to a lack of awareness. Key strategies would include those mentioned for parents and:
- 1:1 support with a trusted adult
- Give the child a choice so they appear in control
- Use respectful communication
- Allow breaks in the day and a safe place to take them
- Visual timetables can help to prepare the child
- Acknowledge when demands are clearly becoming too high for the child
As with all other hidden disabilities, the struggle is real. Try to surround yourself with people who genuinely get it and don’t judge. These people can be so hard to find. I have started a private support group on Facebook for parents and carers who need support with their child with ADHD. It’s a friendly place to chat with others. Please do click this link ADHDinchildren to join. And for anyone on Instagram, I’m there too ADHD Mum.
As always, I would love to hear back from anyone whose children have PDA and can share their stories, wins and fails, so we can all learn from each other.