Dinky has an OFFICIAL diagnosis of ‘Autistic Spectrum Disorder- Pathological Demand Avoidance Disorder (PDA)’

Today was the big day! At 2pm I would be in the room with the diagnosing Paediatrician while the speech and language therapist tried (once again) to do some of the standardised speech and language assessments.

I asked the person who has agreed to PA for Dinky (if I can sort out the mess with social services), if she would come with us today in order to get this done as the letter said to allow 1 and a half hours for the appointment. She agreed.

So this morning I had been adding the odd purposeful direct demand in order to make sure that Dinky is at the level of showing yet another new doctor EXACTLY what PDA is! This was the last appointment I would have to do this for.

After lunch Dinky was at the level of verging on super avoidant and was anxious. I didn’t have to do much, she wasn’t keen on the whole idea of going to the hospital for me to talk to the doctor and for her to play with the ladies.

We got a lift from the PA, and got there in plenty of time. The Paediatrician was brilliant! She greeted Dinky and then went off to do something and then came back and told dinky there were going to be 2 rooms…

  1. The playing/fun room
  2. The chatterbox room

Dinky obviously chose the playing fun room! So I went off into the chatterbox room with the paediatrician.

We went through the Extreme demand avoidance- Questionnaire in a chat format. Dinky scored very highly for extreme demand avoidance, they still had the ones I had professionals fill out in October 2013, which also scored highly.

Then we did the short version of the 3Di. I was asked various questions in relation to the ICD-10/ DSM-IV criteria for autistic spectrum disorder. We went through all the different areas and discussed Dinky in detail.

There was lots of banging coming from the playing fun room! Dinky also came in a few times, she wanted her bubbles, she found a game and asked what it was, then she came in for something else. The SaLT came in to hurry us up, as dinky had, had enough by this point. We got through it and the visits from Dinky just showed the Paediatrician how dinky struggles. She picked up on the fact that Dinky barely looked at her, and when Dinky asked about the game- the paed said she didn’t wait for an answer and seemed to be distracted within herself. I showed her videos of Dinky spinning in all different scenarios and she seemed to take note of how she was spinning and that she was totally in her own world.

We discussed the good bits too. Then I had to leave and the SaLT and the Paed went into the chatterbox room and I nervously waited outside with Dinky and the PA. 30 minutes went past, and I was called in for feedback. Dinky seemed to have had fun and was playing with water. the Paed said dinky was cute and dinky gave her a hug, which was odd, but the Paed seemed unfazed.

Dinky definitely fulfilled the criteria for PDA.

On the 3Di Dinky came out as moderately autistic, which surprised me a little.

Apparently the school questionnaire came back negative for ASD, but they were aware the school had only known her 4 weeks at the time they filled it in and the information was old. The SaLT and the Paed said not to worry about it as it doesn’t change the outcome.

The SaLT’s assessment and observations came back as ASD- PDA

And the Paediatricians observations in clinic (all three paeds obs), came back positive for ASD

Then came the discussion about where PDA sits on the Autism Spectrum. It was quite refreshing to be treated as an equal as it was recognised that I had done a great deal of research on PDA and that I was very up to date on my knowledge on the subject.

We discussed the purpose of diagnosis, the Paed said that for her it is more about the child’s strengths and weaknesses and what support to put into place. I said that was all well and good, but when you are faced with the choice of EBD school or ASD school, that it makes a LOT of difference and wording of the diagnosis, and where PDA sits is essential. The Paed agreed, but I got the impression she was trying to say PDA was not ASD.

She drew a box, put classic autism, PDD-NOS and Aspergers in and labelled the box PDD. I said that as far as I was aware the PDD box name was interchangeable with ASD so all those conditions within the box were coming under ASD. So PDA would sit on the autism spectrum. She was upfront and honest and said that she has to go off the ICD 10/ DSMIV criteria for autism, but understood that typical autism strategies do not work for PDA. I said some do, some don’t.

I asked if they were definitely diagnosing ASD. She said they were.

I was interested in how this would be worded and said that she cant have both PDA and ASD, and that I heard the ENC had previously diagnosed PDA as ‘ASD most closely described by PDA’- or similar.

I asked for a letter confirming the diagnosis, and they said they would both have their reports finished by the end of the week ready to go to the statement team as they agree that EBD school would not be suitable.

I pointed out that the ADHD scales were in the folder I gave them. The paed looked at them and agreed she meets the criteria, however the attention deficit part was hard for her to decipher regarding what aspects would be ADHD and what would be PDA anxiety related. She said she was happy to diagnose ASD- PDA but would have to consult CAMHS about ADHD as she wasn’t confident in doing so.

However she did say that I should consider medicating Dinky for the hyperactivity as her impulsivity could be dangerous and she cant stay on wrist reins forever. 

I asked for a letter confirming the diagnosis… and this is what I was given…

Image

The letter says discharge summary, that is because the social communication clinic is actually the diagnostic service, and Dinky now has a diagnosis and will go back under the community Paediatrician.

The Paediatrician said that she will stay on Dinky’s case as the paediatrician and will see us in 3-4 months regarding the ADHD diagnosis and medication. She gave me a booklet on adhd and circled the medication she was thinking she may prescribe for the hyperactivity/impulsivity.

 

Then that was that… someone should get into contact with regarding the ASD diagnosis and explain where we go from here.

 

So that is that…. Dinky now has a PDA diagnosis!

 

I have photocopied the letter for tomorrow morning.. I am taking it to the Muppet, muppet jr and work shy senco… seems they owe someone an apology… I would take one too!

 

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7 thoughts on “Dinky has an OFFICIAL diagnosis of ‘Autistic Spectrum Disorder- Pathological Demand Avoidance Disorder (PDA)’

  1. well done you and another victory for PDA. Exceptionally well done for informing them of how they should word the diagnosis, consequently you have a bang on diagnosis An ASD called PDA. I have the same issues re ADHD at the moment, Moll fits the criteria but they aren’t sure if this is down to PDA and her heightened anxieties or if she actually has ADHD as co morbid. Regardless of a separate diagnosis they are considering trying her on Ritalin as this may help with the impulsivity. I think that once we get the all important PDA diagnosis our anxieties are greatly reduced, we feel so vindicated and we are happy to simply roll with the rest. I hope the school do apologise, they bloody well should, either way you were right as we already new and they were wrong!!

    • 😀
      Definitely a PDA win! One of my biggest annoyances is the ASD & PDA diagnosis, I don’t understand how those able to diagnose ASD can say there is such thing as both… The paed agreed with me that Dinky was PDA with a lean towards moderate autism as areas overlap.

      Seems we are at the same place with the ADHD. they want me to decide by the appointment in 3/4 months whether or not I agree with trying stimulants (such as Ritalin, concerta ect) for the hyperactivity.

      I don’t think the school will apologise, but at least I posed the question of them doing so.

      More than any of this, Jane I want to thank you for all your support and encouragement during the diagnostic process! You have been awesome and your blog has really spurred me on, knowing that I am right, that Dinky does have PDA.

      So thank you Jane xxx

      • You are more than welcome DM, I am so pleased that I have been able to help in some small way. xxxx

  2. Congratulations Dinky and well done to you for fighting her corner! I bet the victory is sweet! 🙂 I must admit that I shared a tear or two reading this. The relief that you must feel must be overwhelming. Welcome to the family/club Dinky you are amongst some of the nicest people, young and old, that I know of and contrary to popular belief we do have empathy, it’s just slow to kick in! 🙂

    • Aww thanks Julia 🙂
      Dinky is finally an official member of the PDA club! I would agree, we have met an awesome lad with PDA and although I haven’t met you or Mollie, you both seem Pretty Damn Awesome 😉

      It was fantastic to walk into the school this morning with dinky wearing her ‘Auty not naughty’ t-Shirt and hand The Muppet Dinky’s diagnosis after all the crap they pulled!

      It is nice to have that confirmation that I am not crazy and nor am I a bad mother x

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