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DD being assessed for ASD. Should I mention we suspect PDA?

(8 Posts)
Lookdownthesofa Tue 26-Jan-16 18:20:48

The more I read up on PDA, the more I think DD fits the profile. When we first saw the paed last summer I took along a long list of her traits. Now I'm wondering whether I (subconsciously or otherwise) downplayed some of her behaviours. For example, she'll spend most of the day wanting to be called by a different name, pretending to be an animal and engaging DH and I in role play - typically re-enacting a day at school. I now realise these behaviours help DD control her anxiety, but I think I was worried it would be seen as good imagination = can't be ASD.

I'm probably overthinking and am anxious to get to the (right) diagnosis as it's been a long road. I probably wouldn't have the guts to say something to the paediatrician anyway, even if there was an opportunity, for fear of being seen as a "know it all'.

tacal Tue 26-Jan-16 18:53:37

I did not mention what I thought to the paediatrician. Probably I felt the same way you do and was worried what the paediatrician would think of me. But what would be the harm in saying? Maybe it would be better to say so you can discuss PDA with the paediatrician.

Ineedmorepatience Tue 26-Jan-16 20:22:20

I think you should mention it, you are her parent and know her best.

Good luck flowers

imip Tue 26-Jan-16 21:45:51

We mentioned it at the diagnosis meeting. It had been widely acknowledged that she's demand avoidant, however they won't officially diagnose her with PDA as it is not recognised as a condition under DSM5. So she has an official diagnosis of ASD. To help peoe understand, I'd say she is HFA-PDA.

Despite not officially recognising pDA, it's quasi recognition. They recommended the NAS to us as a source of info and support, and on the front page if the website, is a whole bit on PDA :-)

I'd say mention it, because it's good to know where they stand on PDA. If they recognise the demand avoidance, I'd say it's 'as good as'.

I googled our psych blush it appears she is a bit of an expert on ODD, so I feel as if we will be treated appropriately, irrespective of whether the PDA is officially recognised.

Lookdownthesofa Tue 26-Jan-16 22:22:39

Thank you. If there is an opportunity, I will mention it. The next thing on the path to dx is an observation at school and I think we'll see the paed again after that to hopefully get a dx.

The words "anxious"/"anxiety" have featured in all the reports so far. Also I'm remembering now that DD was observed pretending to be a cat during our first meeting with the paed. DD role-played during the session with the OT as well, pretending that I was the teacher and everyone else was a pupil.

The OT's report didn't CC the paed, even though it says in the main body that we (the parents) verbally agreed for the report to be shared with relevant parties, including the referrer (I.e. the paed). Shall I double-check that the paed has a copy of the report?

Aargh, I know I should grow a thicker skin in order to advocate for DD, but it goes against my nature to query things like this - it's as if I'm assuming the job hasn't been done properly!

Lookdownthesofa Tue 26-Jan-16 22:27:14

To clarify, at the end of the report it CC'd the parents, school and GP. I guess I should check who the report was addressed to, but I'm not sure if it says.

PhilPhilConnors Tue 26-Jan-16 22:48:51

I mentioned it and handed in a filled in copy of the extreme avoidance questionnaire, which is part of the PDA booklet you can find on the PDA society website.
The paed completely dismissed it.
We had to go private for a diagnosis (HFA/PDA), but the NHS paed has accepted the diagnosis, and I have since heard that he has suggested it to other parents.
IMO the PDA part is important as the strategies are different to general ASD strategies.
Good luck!

ArtichokeHeartsAppleCarts Tue 26-Jan-16 23:27:37

I would, with the questionnaire Phil mentions

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