Great Ormond Street visit; is this PDA?

Yesterday was a big day for us. We returned to Great Ormond Street Hospital (GOSH) for some testing for our younger daughter. We've waited about seven months since our first visit for this return trip. We were referred to the National Centre for High Functioning Autism by our paediatrican after we raised the subject of Pathological Demand Avoidance and asked if we could be seen by the Elizabeth Newson centre in Nottingham.

Sasha on the train, on her way to GOSH

Sasha, now 6, was first diagnosed with autism when she was 2 and a half. That seems like such a long time ago already!

We have never disagreed with this diagnosis, as Sasha definitely has some autistic traits. However, we always felt there was something more, or something else which described Sasha, as lots of the standard descriptions of autism didn't seem to fit her, and the usual autism strategies brought varying degrees of success. Whilst Sasha liked to see a visual timetable when younger, she didn't like to be told she had to stick to that. She was happy to swap and change what was happening on a whim - as long as it was HER whim.

Sasha is highly sociable, but refuses to participate in group activities frequently - which obviously makes schooling difficult. She is always very polite, but doesn't follow rules. She sees herself as a mini-teacher, not the same as her peers - but she is unaware of her differences. She has always hated the word 'no' if said by another (yes, it was her favourite word to use herself from a young age!) and so we have learnt to 'say no in a yes way'. She is not obsessive about any object in particular, but seems to have a need to be in control. It sounds like she is naughty, but in fact she 'can't help won't' - her refusal to do things is generally driven by fear of not being able to, or fear of getting it wrong, or a lack of understanding of what is being requested. She rarely says no just to be awkward (she does have her moments, but maybe not as many as other children).

So yesterday we spent three hours at Great Ormond Street Hospital. Chris and I were 'interviewed' in one room while Sasha was taken off to another with a lovely lady to do some 'playing'. What that psychologist was actually trying to do was complete two sets of testing - cognitive testing to assess Sasha's abilities and ADOS testing which is an observation of social and communication behaviours.

Sasha came back to visit us after the first hour and I could instantly tell she wasn't happy. After a short break she agreed to return to the room with the female psychologist though, and they spent another two hours in there. Towards the end they returned to our room again, and the psychologist asked if I would sit in with them to try to get the last answers completed. By that point Sasha was extremely tired though, and in full-blown avoidance mode - head on table, saying she couldn't because she was too tired and her energy had gone, deliberately not listening etc.

It then transpired that Sasha had only answered about half of the first test - so in 3 hours she had only agreed to do what most other children would finish in about 45 minutes. I think the psychologist was almost as exhausted as Sasha after trying to persuade her to co-operate! Now she knows how I feel.....

On a serious note, this is both good and bad. Good that they did get to see the 'real' Sasha and appreciate that we don't make up how difficult she can be (yep, I know she's gorgeous but she IS difficult!), but not so good that they couldn't actually finish the testing. Their plan now is to visit Sasha at school and see if she will complete the tests in a more informal setting; I've warned them not to hold their breath.

Proud mum moment worth telling you all about though - the one session of the test she did agree to complete fully was the non-verbal reasoning section. That's where they showed her pictures and would question around them to try and assess what she could understand or infer from them. Sasha scored much higher than her peer group generally would for this.

When we came across the description of PDA (Pathological Demand Avoidance), which is a sub-type of autism, it fitted Sasha exactly. The criteria for diagnosis are:

1. passive early history in first year

2. continues to resist and avoid ordinary demands of life, with strategies of avoidance being essentially socially manipulative

3. surface sociability, but apparent lack of social identity

4. lability of mood (described as Jekyll and Hyde), impulsive, led by need to control

5. comfortable in role play and pretend

6. language delay

7. obsessive behaviour

8. neurological involvement

For any other parents who might recognise this list of characteristics in their child, please do take a look at the PDA Society website for lots of useful information or feel free to contact me directly. Excuse the rough and ready scribble, but this is how I see PDA fitting in with the ASD diagnosis:

We were told at the beginning of our appointment with GOSH that they have moved to be in line with the new DSM-5 medical regulations which have come out (please excuse all the acronyms, but this is my life; I've had to get used to them!).

In a nutshell, this means they now only give a diagnosis of ASD (Autism Spectrum Disorder) rather than state which sub-category (such as Asperger's or HFA High Functioning Autism or PDA) the child falls under. This means we are unlikely to get a changed diagnosis for Sasha unless we decide to visit the ENC (Elizabeth Newson Centre) in Nottingham for a private referral. For anyone interested professionally or otherwise, they are holding a PDA seminar on 19th/20th March 2014.

However, I'm hopeful that the detailed reports produced by the experts at GOSH will still help back up what we as parents have known about Sasha for a long time. It's the sad truth that most professionals rely on the opinions of other professionals more than they listen to the words of a parent with daily experience of their own child. We have been extremely lucky to date with our school placement for Sasha, but as she is set to join a new school in September, this will mean training new people in the 'ways of Sasha'. It's going to be another busy year!

If you do have time for just one more click, I'd be so grateful if you could share this post in any way. More sharing means more understanding for Sasha and thousands of others like her. Thank you.

**To read the end of this story please visit my post GOSH - centre of excellence.

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