‘PDA is anxiety driven, not a discipline issue’
Pathological demand avoidance (PDA) is a type of autism that creates extreme anxiety and an inability to follow demands, requests and instructions.
Amanda, who is mum to Thomas, 10, shares her experiences of raising a child with autism and PDA.
‘Thomas’s challenges are the result of a differently wired brain’
Thomas is our first child and met all of his milestones at the right time. He’s always been bright, and has a vast vocabulary. However, from a young age, he found transitions difficult. He would scream when I tried to put him in his pushchair. At nursery, he would scream when I dropped him off, and at the end of the day, he would run around, making it difficult to take him home.
As Thomas got older, and the demands of real life increased, particularly when he started school, his anxieties became more apparent. He was often unable to leave the house and take part in activities he’d previously enjoyed.
At the time, we didn’t have any experience of autism so we didn’t realise that a lot of Thomas’s anxiety and behavioural challenges were a result of his differently wired brain. We started the journey to a diagnosis when he was five, but he wasn’t diagnosed until two days before his eighth birthday.
While Thomas was awaiting assessment, a friend’s daughter was diagnosed with pathological demand avoidance (PDA), and as our journey progressed, it became apparent that he shared many of the characteristics and in hindsight, had always struggled with these issues.
‘The turmoil he goes through is obvious’
Thomas has a strong desire for autonomy and control, driven by anxiety. He struggles with demands, both real and perceived, such as time pressure: getting out of bed, getting dressed and being ready to start learning at 9am is a challenge. Even someone saying hello can be a demand: ‘Do I need to respond? How do I respond? Will I respond correctly? What if I misheard?’
All of these types of thoughts can create turmoil in his mind. He is likely to respond with ‘no’ to any demand, and if that doesn’t stop the perceived demand, he’ll resort to delaying tactics, negotiation, distraction or feigning injury in order to feel in control of the situation.
Direct praise is another example of a demand. We’ve found that using indirect praise is more effective: for example, saying, ‘Well done Thomas’ creates a series of anxieties leading to demand, because he feels he has to repeat the behaviour next time. Instead, saying, ‘I really like the style of your drawing here’ gives him a sense of achievement without creating a demand out of it.
Leaving the house is difficult for Thomas. People often suggest that offering an exciting day out will entice him out, but the weight of the special day turns into a huge demand itself. This may mean that Thomas is unable to go, or he might go, but then be unable to leave the car due to his anxieties.
When I’ve asked him about this, he’s explained that his whole brain is just telling him ‘No,’ and that he is terrified. The turmoil he goes through in these moments is obvious, and often kickstarts the primitive fight, flight, freeze response within him.
Thomas can manage some days better than others, but it is important to recognise when his ‘bucket is full.’ For example visiting a relative can go well as he can mask his anxieties, but the next day he’ll be exhausted and need to stay in his pyjamas and decompress with no demands.
‘Thomas developed a phobia of school and of learning in general’
During the wait for assessment and diagnosis, Thomas struggled more and more with the structure and rigidity of school. Unfortunately, the school had little understanding of PDA, and despite a very supportive headteacher, his anxieties grew so much that he began refusing school and ultimately developed a phobia of school and learning in general.
His school implemented a part-time timetable to help but by Year 3, Thomas’s mental health had been so badly impacted that he often told me he wished he wasn’t alive. Just the mention of a lesson or school would result in Thomas fleeing, so I decided to resign from my executive assistant role to become his full-time carer. Thomas was diagnosed with autism five months later.
Thomas has been unable to attend school since Year 3. He’s now formally ‘educated other than at school,’ with his learning provided by a specialist tutoring team: KITE Therapeutic Learning Services. He has built up an excellent rapport and trust with them, and they’ve created a curriculum around his special interests. There are still days when he can’t cope, but the team can adjust and work flexibly as his needs change.
Being ‘educated other than at school’ has helped Thomas to regain his trust of education and adults. His world also has more people in it now, which has rebuilt his fragile confidence and feelings of self-worth.
‘He’s happier and more aware of his emotions’
As our understanding of Thomas and his PDA has increased, we’ve become stronger as a family. Thomas’s world is still small and his anxiety is still high, but he’s happier, more aware of his emotions and is able to communicate how he is feeling. He’s more confident, more able to join in with family time, and is slowly becoming more open to learning.
There is a lot of misunderstanding surrounding PDA. People often think, ‘Tricky kid, kicked off, they took him home so he got what he wanted,’ but inside, the pain of missing out and the shame of letting everyone down causes Thomas great sadness. He’s an incredibly loving child, but any anxiety triggers his fight, flight, freeze response.
It’s important to remember that PDA is real and that it is anxiety driven, not a discipline issue. Taking possessions away as a consequence of the child’s behaviour or offering incentives just creates a bigger demand and exacerbates the situation.
Rather, adopting a low-demand approach, incorporating humour to help ease unexpected changes, and developing self-confidence will give a child with PDA a chance to enjoy life in the long-term.
