Pathological Demand Avoidance (PDA) has long been recognised as being a condition related to autism. In fact, until recently, it was listed on the National Autistic Society (NAS) website as exactly that, an autism-related condition.
However last month all that changed, the NAS updated their website to reflect that PDA is now recognised in its own right as part of the autism spectrum, not just related to it.
The main features of PDA are:
- Resisting or avoiding the ordinary daily demands of life
- Appearing sociable, but without the depth in understanding social situations
- Sudden and excessive mood swings together with impulsivity
- Comfortable in role play and pretend, sometimes to an extreme extent
- Initial language delay, often with good degree of catch-up (although we did not experience what we would have called a language delay, more so an unusual approach to language)
- Obsessive behaviour, often focused on people.
What does this actually mean for families?
This might allow a big exhalation of breath for those of you who have a child challenged with this condition (or you strongly suspect they have PDA).
But what does it actually mean?
Until the condition is recognised in a diagnostic manual, then it doesn’t mean very much unless you have a very proactive clinician. However for parent and carers to be able to refer to the NAS website and provide information to a clinician about the condition is a very good starting point. As one doctor once said to me, "Knowledge is power," and she was absolutely right. With so much information available to us with a couple of clicks, (and this week even more so with the newly introduced SNJ partnership with patientINFORM) we have more access to information than ever before.
Knowledge really is power, the more you know, the more you can find evidence for any instinct you may have that your child has unrecognised needs.
How can I get them to take me seriously?
This can depend on many things, some of which are in your control and some of which are not. Catch your clinician on a bad day and this could be harder than usual, but for now, let's focus on the things that are in your control.
How you present yourself is important, it helps others determine whether what you are delivering has any validity. In the early days of Google, before my son was officially diagnosed with ASD, I remember going to see my GP with a range of data I had printed off the internet.
I was convinced he had ASD, so took along all my paperwork and blurted out, ‘I think my son has autism, what happens now?’ My GP chuckled and said, "Oh I can see you have been on Google then. Can’t believe everything you read on there." I was horrified. Not only did I come away feeling humiliated and embarrassed, we were no further along the line to a diagnosis.
However, if I had had the confidence to say "Well, yes I have, I’d like to show you what I have found out," the outcome could have been very different.
- So presentation is important.
- It is equally important to leave your emotions (where possible, after all our children are an extremely emotive subject) at the door.
- Keep a calm, level head and avoid being aggressive or intimidating. Even when you don’t feel you are being listened to, remember that you do not have to provide a response to anything immediately, you can go away and think about what has been discussed and then make another appointment when things may feel clearer for you.
- Ensure any evidence you have is current and from a reliable source. It can be very embarrassing to produce a document and realise it is almost a decade( I know, I’ve done it...).
What if they still don’t listen?
Find out who you can get a referral to. You can ask for a tertiary referral or a second opinion (a tertiary referral is usually a referral from one consultant to another). Use the knowledge available to you such as other parents, groups and websites to see what is out there and what is available in your area. Don’t be bullied into accepting information that doesn’t feel right. Often all we have to go on is our instinct and how well we know our child.
Keep Calm and Carry On
Any process will take time, accept it might take months to get to where you need to be (especially with a condition like PDA, where there are lots of differing opinions on the validity of the existence of the condition) This will reduce your stress levels as you won’t have the expectations of things being sorted in a matter of weeks.
Diarise for when you are going to chase up so you don’t forget or life takes over and then you find that the person who was meant to call you back or referred you on has moved on, gone on maternity leave or forgotten (as has happened on many occasions).
It’s a jungle out there and keeping track of things when you are tired, stressed and battling a system that seems to close more doors than it opens just adds to the difficulty. Remember how strong you are and how far you have already come!
So this might be a shift forward for the inclusion of PDA in future official manuals, but for now at least, it enables us to have that little piece of knowledge to take with us. I hope that this, together with my additional information on ‘how to be listened to,' helps you get the right results for your child.