I'm very excited because tomorrow I am going to London again. Feels almost like my second home at the moment, after a few different trips in to the 'big smoke' for events and visiting special people lately!
Tomorrow is an important day for me. I will be attending the Pathological Demand Avoidance (PDA) conference being hosted by the National Autistic Society.
Although Sasha's diagnosis on paper is autism, and we still agree with that, we have been fairly sure for some time now that she should probably be diagnosed further with PDA. That is why we visited Great Ormond Street Hospital (GOSH) in June this year - to get a more detailed diagnosis.
Sadly, due to staffing issues and a higher than ever number of referrals to that particular department, we are still waiting for our return visit to GOSH when they will assess Sasha in more detail. We've been told that's now likely to be January at the earliest. Sigh.
In the meantime nothing has changed as far as Sasha's character goes, and she continues on in her own happy little world - when she is in control of life around her. We get on with the blips and misunderstandings, and lack of understanding which she encounters and work through it all.
I am very aware however, of how many people are still not 'on board' with the idea of PDA. The fact that research into this has been done more recently than for other conditions means it will take time for the information to be accepted. It doesn't help that our PDA children can come across as 'naughty' because they just don't follow the rules like other children. The difference is, that they 'can't help won't' which is a phrase I know I'll be hearing tomorrow. Meaning that they don't consciously choose to be different, but it's often their anxieties or fear of not being in control/not understanding life around them which makes them choose to try and control it in ways different to their peers.
I'm looking forward to hearing real experts talk about PDA tomorrow and feel I'll be doing a lot of head nodding as I relate their examples to our life. I'm so pleased that the main organisation for autism in this country is leading the way in creating awareness of this particular type of autism as that can only lend credibility to a new area of diagnosis. I'm fairly sure that there will be several (hundreds of) children in this country diagnosed with autism but for whom the standard autism strategies just don't work. For those parents who have not yet heard about PDA, I hope they do get to hear about it as I feel the whole way you approach situations with PDA children is important to learn - it's just so different from 'normal' parenting, or even from 'standard' autism parenting. These strategies also apply to education, and I'm going to post again the wonderful mind map which I believe to be a great starting point for getting the best from our children.
I do intend to feed back from the conference so I hope you'll come back to read more. I should then be able to give a wider range of examples of how to 'spot' a PDA child, as well as specific examples of how Sasha has exhibited these traits over the years.