1st TAC and my mission!

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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!

MUPPET!

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

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4 thoughts on “1st TAC and my mission!

  1. How you manage to stop head butting the wall during these meeting I will never know lol your tolerance of the perpetually dumb is admirable 😉 Melatonin is highly used in autism specifically because children with autism often do not naturally produce enough melatonin to induce sleep. This is so well know I am amazed that they have tried to fob it off as mainly used with ADHD, they really should do their homework. Is your GP still referring you to a pediatrician who diagnoses pda or have you got to go private now?? If you go private really investigate them first and ask on the groups if anyone has any prior knowledge. I got caught out once by one, even though the NAS had him on their list. I would be wary of anyone diagnosing in a day unless they are highly experienced and their assessments are acknowledged as valid by others. I understand you urgency but it would be a tragedy to spend a lot of money on a diagnosis that was then not accepted by your local authorities. I don’t want to come over as patronizing I know you have your head screwed on but I would hate you to make the same error that I did. Fortunately I got out of it before any serious damage was done or any money had changed hands.

    • Sorry Jane, I only just saw this as the spam filter seems to be holding a lot of replies and I just checked it…

      Thanks for replying as always!

      To be fair I have come across a large amount of perpetually dumb professionals in my time. I find it amusing to listen to them and then bring up in important meeting their stupidity. It is fun.. It’s like a sport for those who have professionals in their lives… I recommend it! 🙂

      As for the melatonin I know!
      The TA said “that’s a lower form of Ritalin right?”
      “Er no love, it is a sleep hormone….” Oh dear… It really is awful how uneducated these people are. Have they not had any kids on melatonin before?

      As for the private assessment. I know an I was wary. Although I found one today who is accredited by the hcpc, I found her listed on there, and she hasn’t got a bad rep. She does the disco. I would go to ENC but it is far too much, too far by train, and their waiting list is long.
      My GP is doing the referral but who knows how long that will take. I need the school properly on board now.

      I wouldn’t for a moment take your advice as patronising, you have been there done that and have many t-shirts. Personally I think you are awesome, and any advice is welcome! 🙂
      I just wish I could help you…

  2. Have just found your blogs! We have just had our 9 year old diagnosed with PDA but it was much simpler! Our paed and CAMHS ladies agreed to refer us to another paed who knew about PDA. I took the info off the NAS website, highlighted what was relevant. He raw as it , agreed, and wrote a diagnosis letter! I do hope you get your much needed diagnosis. We are now trying for a statement….. Not holding our breath though! Good luck!

    • I am glad you got the diagnosis for your 9 year old, I hope it has meant more understanding of your child.

      I wish you all the best for your statutory assessment and statement.

      If you haven’t already, check out a blog by Jane sherwin, she has a 9 year old with a PDA diagnosis.

      Her blog has much more scientific stuff in (this one is normally me ranting, or like a diary of dinky’s behaviours), and can be found on he blogs I follow… Pathological demand avoidance- an autistic spectrum condition.

      DM x

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