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.
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If PDA syndrome is now recognised in its own right why can’t certain areas recognise and diagnose. Why are parents still fighting a losing battle, and why are doctors, CAMHS ect still passing the buck? A Phycologist at camhs told me almost 2 years ago he suspected my daughter had PDA syndrome but after an MDA she didn’t meet the all the tick list boxes for ASD, but they felt she did meet the PDA diagnoses. Because we leave in wakefield and it isn’t something that is recognised under our health services we either have to some how come up with the money to pay private or live without the diagnosis it’s appalling and disappointing that although recognised now it still doesn’t change anything!
I can hear how frustrating this is for you and your family, but this is a the start of a long process. For diagnosis to be given in some areas, the symptoms and name of the disorder have to be included in one of two (or both) of the diagnostic manuals used by professionals which are the DSM V and the ICD 10. It maybe that you live in one of those areas. What about requesting a tertiary referral via your GP, some GPs will do so if you ask specifically and can quantify your reasons for doing so. Is the diagnosis important from an education point? I mean is it stopping you from getting the education you feel your daughter needs? Have you read ‘My daughter is not naughty’ by Jane Alison Sherwin, she details her families journey with PDA and it might be helpful. Best wishes Angela
It’s not actually true that they need to be in the diagnostic manual. They can use the code for ASD and word it “Autism Spectrum Disorder: PDA subtype”. Plenty of children have already been diagnosed with PDA.
Thank you – Yes indeed, it can be diagnosed as a sub-type, however, In my experience it very much depends upon the area a person or family live at this moment in time (unless you go out of area) – As I wrote ‘for diagnosis to be given in some areas’ and as I discovered yesterday, it is very much is dependent on who you see and how you present sadly – Thankfully the condition is becoming much more widely known about and this can only help children, adults and families affected by the condition to get the help they need.
I’m currently waiting for a reply from my GP for an outside referral, my daughter is in a behavioural resource at the moment full time as there isn’t anywhere else that will take her as she doesn’t have anything wrong with her apart from being extremely violent and naughty as they put it. A diagnosis would be of benefit from an education point of veiw. It’s just frustrating that it’s been so long and still we are no further forward today than we was 4 years ago. Thank you for the info on my daughter is not naughty I shall be reading this, hopefully I can pick up some pointers.
Is there anyone you could recommend privately in Hertfordshire or London to assess for PDA as nobody seems to listen.
Thanks