Friday 17 October 2014

Who am I? What is PDA? What am I doing here?!

Just in case I have any new readers, and also for the benefit of all my lovely old (but young at heart) readers, I thought I should do a little update post.
T holding S the month she was born.
I'm Steph, and I have two girls, currently aged 9 and 7.
Pre-diagnosis, in June 2008
Anyhow, I digress. I started the blog just after we got a diagnosis of ASD (Autistic Spectrum Disorder) for our younger girl. Sasha was just 2 and a half years old at the time, and so much was running through my head that I thought it best to write it all down. I also thought it would be a good idea to share with friends and family, to try and help them understand Sasha's behaviour seeing as they couldn't be here all the time.
Post diagnosis, in June 2009
The name of my blog may not have been particularly inspired (I didn't really know back then what I was getting myself into with the whole blogging community thing, else I might have given it a little more thought...!) but I knew that I wanted these ramblings to be about both my girls. Autism involves the whole family, and I've always been just as, if not more, concerned about the way it affects Tamsin's life too.

So Steph's Two Girls was born, over 4 and a half years ago now, and of course there are plenty of posts to show what has been going on in all that time. Suffice to say we've had ups and downs, but on the whole we have been very lucky and found our way through the Special Needs Jungle quite well (see what I did there, Tania?! ;)).
The girls sitting still together for a change!
Sasha attends the same mainstream school as her older sister. I applied for, and received a Statement of Special Educational Needs (SEN) for her just before she started Reception aged 4 years and 2 months. I managed that process back then with very little help; I had been told by local practitioners, just as so many other SEN parents wrongly are, that she 'wasn't bad enough' to get a Statement or any extra support in class. Last year, under a pilot scheme driven by big changes in the law (specifically the Children and Families Act), we agreed to change our statement to a new Education, Health and Care Plan. This is intended to discuss all the support which Sasha may need both at school and at home, and is a fairly lengthy process which can cause plenty of headaches. The law and language we have to learn as SEN parents deserves posts all of their own, so look out for those ones!

We initially had concerns just about Sasha's speech as it wasn't very clear, and she didn't seem to be developing sentences. It was then that we were referred on to a Paediatrician who gave us a diagnosis fairly quickly. Sasha's speech did develop but can still be a little unclear, especially if she gets upset, and she does sometimes have an unusual turn of phrase. An example of this was her sudden use of the phrase 'Take that, Punk' to an adult friend of ours in a jokey way this weekend - something she picked up from one of the Minecraft YouTubers. Another is when she replied 'oh, you mean snazzy?' when she was told she looked pretty and smart recently.

After much reading and research, we have come to the conclusion that Sasha has a particular sub-type of Autism called Pathological Demand Avoidance (PDA). Asperger's Syndrome and Classic Autism are two other sub-types.

The central difficulty for people with PDA is their avoidance of the everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control.
People with PDA tend to have much better social communication and interaction skills than other people on the spectrum, and are consequently able to use this ability to their advantage. They still have real difficulties in these areas though, mainly because they need to control the interaction.
The main features of PDA (and how it differs from other sub-types of autism) are:
obsessively resisting ordinary demands
appearing sociable on the surface but lacking depth in their understanding (often recognised by parents early on)
excessive mood swings, often switching suddenly
comfortable (sometimes to an extreme extent) in role play and pretending
language delay, seemingly as a result of passivity, but often with a good degree of 'catch-up'
obsessive behaviour, often focused on people rather than things.

Last year we asked for a referral to a specialist centre to see if PDA could be diagnosed, and we ended up at Great Ormond Street which you can read all about in my post GOSH - Centre of Excellence?. Their conclusion earlier this year after several tests and sessions was that Sasha has high-functioning Autism. However her avoidance and sensory issues mean she struggles to join in full-class activities; it takes her much longer than her peers to process instructions and she does lack social understanding of certain situations. A lot of her issues are driven by anxiety and the need to be in control. PDA is very different to ODD (Oppositional Defiant Disorder) and I'm aiming to write a post about that too very soon. Sasha's behaviour can be described as challenging in many ways, but fortunately for us she is never violent, and since we began using the PDA strategies and educated others on them, we have far fewer meltdowns. Sasha is generally happy and curious, which has helped get her through school so far.

Now though, the serious work has stepped up, and more is expected from life at school. Sasha needs support most of the time, but even with that support available she cannot always be persuaded or motivated to take part. Tests or exams are not ever likely to be achievable under 'standard' circumstances, and we are currently evaluating what type of school or education might suit her best going forward. Sadly we haven't yet found anywhere that can truly meet her needs for secondary level, and so my search needs to continue.

On a personal level, whilst I haven't been able to return to full-time work due to the extra challenges, I have managed to spend a year working in the offices of a great local Autism and ADHD charity. I've moved on from that to help run Early Support training sessions for other parents who have children with disabilities, I sit on the local Parent Carer Steering Board and I work as a rep, attending at council meetings and presentations, telling my story as a parent and trying to influence outcomes for other parents locally. I'm also currently attending Brownies as a helper for Sasha. I hope to be able to spread the news about PDA a little more in the future too - so many families out there just need a little more understanding.


So there is never a dull moment, but I do occasionally reflect back on what a different path in life I have ended up travelling. If you made it to the end of my ramblings, thanks for reading and hope I haven't put you off coming back some other time - it's not all usually this serious, honest! Now I must get off here and stop browsing old photos....

Linking up to the wonderful #PoCoLo

Post Comment Love