Wednesday, 18 January 2012

Pathological Demand Avoidance = my daughter; and a challenge for all..

I have a little challenge for you. Please click on the link to this book below, click to look inside and then read page 13. (You can even order this book from Amazon if you really want to understand Sasha a little more!) at Understanding Pathological Demand Avoidance.

This is a book which was written in the early part of 2011 (so quite recently!) after a lot of research. PDA is a newly researched 'topic', and not many people have heard of it. 

PDA IS Sasha. Sasha still has autism, but as is described in the book, autism has really now become an umbrella term for several different conditions.

The description of PDA fits Sasha more precisely than classic autism.

There's some really good information about it on the NAS (National Autistic Society) pages here.

I wish that everybody involved in Sasha's life in any way could read this book. Understanding is the key to helping Sasha, and removing general ignorance in society.

PDA is all about high anxiety levels when the child/person is not in control. As a quick summary, I'm quoting the NAS text below:

The main features of PDA are:
  • obsessively resisting ordinary demands
  • appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
  • excessive mood swings, often switching suddenly
  • comfortable (sometimes to an extreme extent) in role play and pretending
  • language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
  • obsessive behaviour, often focused on people than things.
When I suggested this is what I thought Sasha has to her paediatrician shortly after diagnosis, the paed politely suggested I might not want to shout about it or have it as a diagnosis, as it is largely unrecognised and so Sasha would get no help or sympathy.

She was right to say that at the time; as Sasha was so young we did have some great input from the Autism Early Years team. Now Sasha is at school though, the help disappears into the background and pretty much turns into a 'fire-fighting only' kind of help. So we have to do the best we can to put plans in place for Sasha's future.

Now I'm left with the decision of whether to push for this diagnosis or not. The professionals don't want me to, as of course it would cost them money (it costs about £3000 to get the diagnosis privately). The label itself isn't important to me - Sasha still has autism, I'm not denying or trying to change that, but the techniques and strategies needed to manage her can vary a lot from other 'classically autistic' children.

I think it's important that the country recognises how many children like this there are out there. With higher recorded cases comes more funding and therefore research, but more importantly to me, and for Sasha in her future, more understanding.

There was an article on this topic published in the Daily Mail online recently which was fairly top-line and tame, but the readers' comments were far from that. The suggestion of bad parenting was rife amongst them, and 'what that child needs is a good slap' came out very strongly from the old school. I was, and still am, quite upset and disgusted by how many people felt it was fair to comment on something that they have no experience of - and also by how the Mail somehow decided to stop publishing comments when it became clear there was going to be a backlash from the experienced parents amongst us. I was in two minds as to whether to post a link to it here, as I certainly don't want to publicise the idiots, but I think I should as it gives a clearer picture...

I know, and I've said all along, that Sasha's behaviour makes her look like just another naughty child. I've also said that, in some strange way, I'm actually glad that her speech isn't clear, as at least that gives an indication that all is not right in her world. I'm also insanely grateful that I have another beautiful daughter who is of course by no means perfect (but who is?!), but who does respect authority, at home or at school, and who does understand social situations and implications, and who does care what her peers think of her etc. I've obviously not parented them in any different way and I just wish some more people could see and understand that. I would dearly love to parent Sasha in the 'typical' way, and even call in Supernanny if that is what it took.... but I'm guessing she doesn't take on cases like this. 'Typical' parenting is so much easier (but still insanely difficult, I'm not knocking anyone else out there!) and believe me I would make my life and Tamsin's much calmer and less stressful if there was any way I could. It takes a lot of work to keep on top of situations, second guess every possible outcome and be able to offer alternatives all the time.

The readers' comments opened my eyes to how difficult life really could be for Sasha as she grows up. It's a lifelong condition; she won't grow out of it. So please, for Sasha's sake, help spread the word. I know this is what I will be doing in 2012.