So that’s the mission. The mission that is leading me head first into exhaustion with the 6 week summer holiday just around the corner…
We have gone to the Paediatrician who said she wasn’t autistic, fulfils the criteria for PDA but doesn’t know what it is, and then says he wants to assess for ADHD in three months.
Then I go to the GP who agrees to refer to a PDA diagnostician and prescribes the melatonin.
Dinky is allowed to go on the trip and only has one meltdown… I’m stressing for most of the day, then take her to swimming…
Today the last in the week’s meetings… The TAC.
First of all I was surprised it was just myself, the integrated services lady and the Head teacher. I thought the senco would be there, but obviously not!
They didn’t have to schedule a TAC I’ve seen both of them and spoken to them on the phone inbetween setting up the TAC and the TAC itself.
What as interesting was the fact that both decided to act stupid. Which I think is more irritating than actually dealing with blind stupidity.
First of all we sat down and the head said she had just seen Dinky who had given good eye contact and seemed happy. Which annoyed me as apparently children on the spectrum now can not give eye contact or be happy!
Then we talked about the trip and both of them got all excited as it seemed it was a win. Well yes it was good, one meltdown over the toilet queue.
Apparently the teachers were impressed that I had printed pictures of the beach they were going to and made a short social story. I said “thanks, but I didn’t do it for their benefit. I did it for dinky.”
We talked about what the plans were for the summer holidays… And I said if I don’t collapse from exhaustion then quite a lot.
The integrated services lady asked what the difference was between Pathological Demand avoidance and oppositional defiance disorder. Now… I’m not sure if she did it for the head teachers benefit as she has previously agreed it is Dinky to a T, or whether she thinks dinky is just oppositional.
So I explained it the way I see it…
ODD is oppositional (clue is clearly in the name!).
PDA is avoidance (clearly in the name also!), it is anxiety based and is an ASD.
Where dinky is concerned she would rather hide than oppose, so therefore she doesn’t have ODD.
Then I was shocked… The head said that she agrees it does seem to be anxiety based and Dinky’s first instinct is to flee she only fights when she is approached again or is made to comply with the very thing she was avoiding.
We discussed the fact that Dinky has been prescribed melatonin. The head was under the impression it was prescribed mainly alongside Ritalin. Which is false and I had to inform them that there are tons of children on the spectrum that are prescribed melatonin. The integrated services lady said that the sleeping issue is generally a symptom of ADHD.
To be honest I was starting to get very irritated with everyone trying to tell me that Dinky doesn’t have an autism spectrum disorder, especially when they agree in principle that she fits the criteria for PDA, or have agreed in the past.
The thing is,I have done the research. I have read all of the information from Norsca which includes all of the publicly available research by Elizabeth Newson, I have read ‘understanding pathological demand avoidance in children’ by Christie et al, I have read research by liz o’nions, and women and girls on the spectrum by Dr Gould and Dr Ashton smith. I have gone through the criteria over and over again and I have had conversations with two parents of children diagnosed with PDA, and met one of the children a few times now. Both parents say Dinky has PDA.
The paediatrician didn’t know about it and therefore can’t have an objective opinion. He is right Dinky doesn’t have Kanners autism. The integrated services lady has looked up PDA, has never seen it before, and doesn’t KNOW about it. She said it fits the first time she met dinky just on the criteria I showed her.
The teachers, well, they have degrees in primary education. They had never heard of PDA and again think autism is just kanners autism or aspergers. They don’t see the spectrum.
Now ADHD has taken precedence and I swear I should have kept my mouth shut about it.
We were talking about dinky and transition into year one. She meets her teacher next week before going over the week they break up for summer.
The head said that Monday dinky was being more challenging, when they called for a year 6 teacher who happens to be good with Dinky, she managed to get Dinky to say that she wasn’t happy because the role play room had changed.
This led to the head believing she could ‘fix’ the issues within 18 months to 2 years… Roll up all those with ASD superstars! A school in the south of England can ‘fix’ the issues your child has within 2 years!
We were discussing support and strategies when the head was called away on a challenging child emergency. End of TAC.
I have been in email conversation with a private paediatrician that can make a PDA diagnosis. It will cost a lot half of the Elizabeth Newson centre, but still more than I can afford, I would either have to find out if they take credit cards, or save. The upside is the wait time is only 4-8 weeks for appointment, diagnosis is given on the day and the detailed developmental report is sent within 2 weeks. So if I booked it next week, I could, in theory, have a diagnosis for Dinky and report for back to school, or in the first 2 weeks of going back.
I will have to have a serious think about the route I take now.
I have my mission… Dinky