Wednesday, 18 January 2012

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

Stephs Two Girls January 18, 2012 autism, Pathological Demand Avoidance, PDA, PDA info, PDA Life

I have a little challenge for you. Please click on the link to this book below, called Understanding Pathological Demand Avoidance Syndrome in Children. Click to look inside and then read page 13.

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

PDA IS what our daughter has. She 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 her more precisely than classic autism does.

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

I wish that everybody involved in our daughter's life in any way could read this book. Understanding is the key to helping her, and to 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 our daughter has to her paediatrician shortly after diagnosis, the paediatrician politely suggested I might not want to shout about it or have it as a diagnosis. Her view was that it is largely unrecognised and so our girl would get no help or sympathy.

Maybe she was right to say that at the time. When our girl was young we did have some great input from the Autism Early Years team. Now she 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 her future.

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 be diagnosed privately). The label itself isn't important to me - our daughter is still autistic, 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 our girl's future, more understanding.

There was an article about PDA published in an online news source recently. It 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 this news resource somehow decided to stop publishing comments when it became clear there was going to be a backlash from the experienced parents amongst us.

I know, and I've said all along, that our daughter'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 our younger girl 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 our eldest daughter'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 our youngest girl as she grows up. It's a lifelong condition; she won't grow out of it. So please, for her sake, help spread the word. I know this is what I will be doing for a long time to come.

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.