Wednesday 15 May 2013

PDA (Pathological Demand Avoidance Syndrome) Awareness Day - do you know anyone like this?!

There's a fantastic new resource which has been released this week which I'd love you all to take a look at (my blog is even included on it, lucky me!) 

May 15th is PDA (Pathological Demand Avoidance) Awareness Day. I know, I know, there's loads of these 'awareness' days around just now, right? Well this one is the one closest to my heart, so read on if you care just a little...

Sasha got her diagnosis of autism aged 2 and a half. I blogged about that in my first few posts. Even back then, I didn't feel it fitted exactly. Sure it explained a lot, but there were certain traits of autism which Sasha didn't really show. She had delayed speech, and delayed 'playing' compared to Tamsin. Most things, such as role play, she did eventually do, but probably about 6 months later than Tamsin had. I joined a group of parents who all had girls with high-functioning autism, and as they described their girls, there was a lot that didn't resonate with me. I initially assumed it must be because Sasha wasn't high-functioning, and yet she was (and is) very bright - numbers and foreign languages were a speciality at a young age.

So after our diagnosis I did more research. I think all parents of Special Needs children carry on with the research and the learning - to us it's important to find out any new ways which we can help our children. I came across the definition of PDA, and I could tick virtually every point when thinking about Sasha.

According to the NAS (National Autistic Society) website, the main features of children with 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 rather than things.
You can read about this in a bit more detail (but nice simple language!) by clicking here. The bit that resonates most with me is:

 'People with PDA are often very sociable and can display degrees of empathy previously not thought to be consistent with autism. Sometimes it seems that they are able to understand other people at an intellectual level but not at an emotional one. However, despite their use of social niceties, their social interaction is very often flawed by their inability to see the bigger picture, their lack of boundaries and their desire to be in control of the situation. They often understand rules but don't feel they apply to themselves. As children, this can lead to playground peer group difficulties. One parent described how "to other children he will happily act as if he was their mother - 'have you washed your hands' or 'don't put your elbows on the table' - but he doesn't have a sense of needing to follow the same rules."'

The main issue for Sasha and us is always control. Sasha has a need to have things exactly as she wants them - and there's not always a logical reason for what she wants. Some of it can be explained with autistic traits, such as liking routine, or sensory issues (when she absolutely would not wear socks - for a whole year!), but at other times it's driven purely by the need for control. Her choice of music in the car, or wanting her sister to sleep in the same room as her, or having chocolate for breakfast - yes, we've given in to all of these demands. Simply because we had to.

It's really difficult to describe, and I am very aware of how it sounds as if Sasha is just being selfish, or naughty, but I can assure you that she is not. It's as if her will is being driven by something entirely different to our other daughter. It may sound odd, but I know I can always make Tamsin do anything we want her to - she will react to reward systems, or bribery, and she just knows and accepts that we are in charge. Sasha does not understand this. She shows virtually no respect for anyone in authority, but not in a rude or intentional way. If she has decided she is not going to go out, you really cannot make her. It was quite an isolating experience when she was younger - leaving the house to go anywhere other than swimming or Willows became virtually impossible, and toddler groups were a definite no-go, as she just was not prepared to follow rules.

Of course, if I had to leave the house for an urgent issue but Sasha didn't want to, such as to get Tamsin to hospital, then I do know I would be able to, even if it meant finding a physical strength I've never used before. There's not much point doing that to just go shopping for example, as the ensuing meltdown would most definitely ensure you didn't get any shopping done.

It's like permanently walking on eggshells. We've learnt how to manage that now, so it almost becomes second nature - but it does mean that Sasha is generally the one in control. A recent description of her agreed - 'Sasha has subtle control most of the time'. I tend not to make fixed plans as I'm never quite sure what mood Sasha will be in on any given day. We need a purpose and Sasha's agreement for a day out - a general meeting in the park could work, but we'd most likely only be there for 10 minutes before Sasha decides she's off. And once she has decided, there is no changing her mind.

Next month we have an appointment with a specialist team for children with high-functioning autism at GOSH (Great Ormond Street Hospital). I've asked for this extra in-depth referral and assessment not because we don't feel Sasha has autism (she does), but because we feel so many of the PDA characteristics can be applied to her. The main reason for asking for a more expert opinion is because the strategies needed to teach and encourage and develop children with PDA are so different to those used for children with 'just autism' - for example, routine and visual timetables help, but so does changing them and going with the flow (Sasha's flow, that is!!). It's important to be flexible and understanding with Sasha - personal relationships are so key. 

I am already bracing myself for the fact we may not end up with a PDA diagnosis for Sasha, as I know from PDA support groups that Sasha is in no way extreme and we are very lucky indeed that she is actually so happy and loving and curious. We don't experience extreme violence from her - but then maybe that is because we have got so good at managing our lives around her?! I have been strangely relieved to read other blogs featuring children like Sasha - a brilliant one I would recommend is Pathological Demand Avoidance an autistic spectrum disorder.

If you've got this far, thanks for reading. Life is definitely not all bad, but it would help Sasha if more people knew about, and could try to understand this condition, so please do share.

Here's a useful tool for helping PDA children in the classroom: