Frequently asked questions
My child was not 'passive' in the early years. Is this significant?
Many are actively resistant from the outset, yet may also be 'passive' about learning or trying new things. eg It may seem as if they cannot be bothered to attempt to crawl or hold a bottle, but being passive over everything is less common. As a result questions about 'early passivity' do not feature in the Extreme Demand Avoidance Questionnaire (EDA-Q), a measure of PDA characteristics.
I am not sure whether my child role plays excessively?
In some, role play is very obvious. This may be acting out parts or characters from TV, films or stories or pretending to be an animal. However, role play may be more subtle and many children will have what appear to be multi-personalities, behaving and acting very differently in certain circumstances or with different people. They may be overly grown up or bossy with peers, acting like a teacher or adult, or be extremely babyish in another situation. It does not look like play acting, but more like a personality transplant. Parents may wonder which 'character' is the real child, the one seen at home, at school, with peers or the one that the grandparents see?
My child behaves well at school and they don't see the problems we experience at home.
This is very common, especially in the earlier school years. Children do manage to hide or mask many of their difficulties at school. There is often a desire to fit in and also keeping a low profile can be a way to avoid drawing attention and having to face further demands. However, 'covering up' does cause stress and anxiety and this will often explode out at home. Here it is safe and there is someone who understands them well enough to cope with a meltdown and pick up the pieces afterwards.
For many children it is a question of tolerance and provided anxiety at school remains below a critical level, challenging behaviour is not a significant problem at school. However, pressures at school do increase and most children will reach a point where the demands are too great and they are no longer able to cope as well. Things may start going wrong around Year 2 or 3 or a previously school compliant child may go off the rails with the transition into secondary school.
My child has PDA, do I need to remove all demands to enable them to cope?
No, it is a case of reducing demands rather than removing them all completely. There are no hard and fast rules about what level of demands can be coped with. It is a question of working within an individual's limits and recognising that their capacity to cope can be highly variable. What they can cope with today, may be too much tomorrow. Often, relaxing a pressure/demand in one area will reduce anxiety and enable them to cope with a different pressure. So, for example, relaxing the requirement to wash and clean teeth in the morning may make the journey to school manageable. Pick your battles, evaluate your priorities and your child's capacity.
Sometimes demands/pressures may need to be reduced to an absolute minimum, as the child is barely coping with anything. For example, this might be the case following a breakdown of a school placement. However, pressures and demands are not to be abandoned forever, but are reintroduced gradually to build up tolerance levels and the capacity to cope.
I have heard that those with PDA need indirect instruction, negotiation, humour and other 'long winded' approaches to get them to comply with anything. This is time consuming, do I need to use these PDA strategies all the time?
Again, this is a question of tolerance at any given time. When calm and in the right mood, it can be surprising what demands can be coped with. However, people with PDA are naturally anxious and have many worries, making it harder for them to cope with further demands. If it is clear that an individual is struggling to comply, the key thing to remember is that they are far more likely to respond positively to PDA friendly approaches than alternatives.
What can I do if my area does not recognise PDA?
PDA is not listed in the diagnostic manuals, and as a result some professionals do not recognise PDA. Some may be happy to offer an Autism Spectrum Disorder diagnosis, and go on to mention 'demand avoidance' in the diagnostic report. This should be sufficient to get the right support for your child in school, etc.
If you are struggling to find a professional in your area who can diagnose PDA, please contact us as we may know of a professional near you who we believe has diagnosed PDA before.
Alternatively, you may need to look outside of your area, such as the Elizabeth Newson Centre. Your GP may be able to apply for funding for an out of area referral if there is nobody locally who can diagnose. Some parents choose to get a private assessment.