Our PDA Story {Week 35} - Steph's Two Girls

Welcome to week 35 in my blog series 'Our PDA Story', where I have been sharing experiences written by families and adults living with a type of autism called Pathological Demand Avoidance (PDA).

It has been a while since I last summarised our own 'story' so it felt like now would be a good time for an update. I'm going to go right back to the beginning to explain how we found out about autism and PDA, and give you a brief history of how life has been here over the past eight years since our youngest daughter first received a diagnosis of autism. First though, some background information.

What is Pathological Demand Avoidance?

The PDA Society call Pathological Demand Avoidance a 'profile of autism' and the National Autistic Society say it's a 'behaviour profile within the autism spectrum'. Personally, I've described PDA as a sub-type of autism, on a par with Asperger's Syndrome and classic autism (occasionally known as Kanner's Syndrome).

People on the autism spectrum have difficulties in three main areas: social communication, social interaction and restrictive or repetitive patterns of behaviour. Those with the PDA profile are said to have one extra characteristic in particular which they all share - their avoidance of everyday demands made by other people, due to their high anxiety levels when they feel that they are not in control. For more detailed information, please see my previous post about PDA.

Now, on with our story. I tried to keep it short, but a lot has happened over the past eight years!

Birth to Diagnosis

Sasha was our second child and as a baby she initially seemed quite content. I probably felt I was struggling slightly more than I had with our first, but I put that down to the fact I was exhausted from having to run after a two year old toddler as well as start all over again with a baby.

Sasha as a happy baby!

We have countless photos and video clips of Sasha smiling and happily interacting with her older sister; so much so that it seems as if everything was a breeze and we lived in a permanently happy household. Looking back, I think it did actually feel like that at this early stage, although it's also true that you don't tend to take photos of the unhappy times....

So things began to get slightly more difficult as Sasha passed the six month stage and I was trying to take Tamsin to toddler groups - music sessions, dance classes and the like. Whilst Tamsin was quite happy to sit down, listen and follow instructions, Sasha was very vocal in making it clear when she didn't want to be somewhere. I'd generally put it down to hunger or tiredness though.

By the age of two, Sasha was making a lot of sounds but still didn't have any clear words. The Health visitor assured us at the 24 month check up that there was nothing to worry about, all children develop at different rates. Whilst we understood this, we also knew that our eldest had put together sentences much earlier than that and so we decided we should investigate a little further. We discovered that self-referral to the speech therapy team was possible and so we emailed that team.. the first of many emails over the next eight years. If only I'd had a pound for every email I've had to write since regarding Sasha...

We received an appointment for a speech therapy assessment in September 2009 and after a chat with me and an attempt to engage Sasha in conversation, the speech therapist referred us on to a paediatrician, with the promise of speech therapy to follow and a comment that the referral to a paediatrician was a routine event. So I didn't worry too much.

We carried on as usual that Christmas; the appointment was set for January. We met the paediatrician at 9.30am - I remember that clearly because I remembered thinking that I would usually use the excuse of Sasha being tired to explain away her behaviour. Obviously at that time of day I couldn't though.

The paediatrician tried to run through some basic tests with her (Griffiths assessment) but Sasha was reluctant to engage and seemed to only want to do certain parts of it. After a short while, she tried to drag me out of the room and then went to lie on a couch under her coat when I made it clear we were staying a short while because I needed to talk to the paediatrician.

The 'triad of impairments' was mentioned and I think it was actually me who mentioned the word autism first. I'm not sure how or why, because I hadn't gone in the room expecting it, and I knew next to nothing about autism (the usual Rainman movie was about the limit of my knowledge at that point). I surprised myself, the suggestion was a surprise, and yet at the same time it was a relief - almost like a penny dropping. A reason for the behaviour I'd been seeing, which was described as oppositional by the paediatrician. I was sent away to think about it and to return in a month with Sasha's dad (who wasn't present at the first appointment, given that we didn't think it was anything serious). The next month, with our agreement, the paediatrician gave us a diagnosis of autism spectrum disorder.

The Early Years

We were sent away from the paediatrician with a couple of leaflets about support groups (one which became a lifeline to me, called Spectrum Girls) and a referral to the local Autism Advisory team who were part of the Local Authority services. I remember writing a blog post at the time finding it frustrating that there was a six week waiting list; knowing as I do now that so many parents have to wait much longer than we did for both a diagnosis and any kind of support, I realise how lucky we were.

The autism team came to visit and assess Sasha, then an Early Years Advisory teacher was booked to come and spend an hour a week with Sasha in our house. It was to be during term-times only, but even that brought a much welcome relief for me and began to open our eyes to her behaviour more generally. I wrote this post about those times; back then I used the word tantrum but these days I know better and would class it as a meltdown.

Sasha had been attending a local nursery for a few hours a week from a very young age, but they began to struggle with her behaviour. They were keen on all the children doing the same thing (such as going out for walks) at the same time but Sasha would refuse and avoid. They soon realised there was no way to make Sasha do what she didn't want to do. They realised she needed extra support but informed us that there wasn't funding available for that. So we ended up moving Sasha to the nursery attached to her big sister's mainstream school. The people there made all the difference; it wasn't plain sailing by any stretch and I remember being called to collect her a few times when she had reached the point of no return, but on the whole she was happy.

Infant school

Sasha managed to attend most of the time throughout Infant school and although she needed extra support, the school welcomed her. The staff were very understanding, listening to me about her needs, and they were as flexible as they needed to be whilst trying to involve her. I wrote a post way back then about the fabulous school cook who went above and beyond with a letter for Sasha. Too many others worked with Sasha to be able to name them all individually, but I hope they know how appreciated they all were.

The only 'formal' family photo shoot we've had done; it was part of my mum's 70th birthday celebrations and as you can see, Sasha was in high spirits. Getting her to sit still for a photograph is still a feat, and one which we don't attempt very often!

Sasha was progressing in her development all through these years. She would rarely sit still though and at times chose to pace around the classroom touching objects. To the untrained eye it seemed as if she wasn't listening or paying attention but it became clear that she was taking information in and had a good level of understanding of topics she was interested in. I could count the number of times which she ever agreed to do homework with me on one hand, and likewise with reading books, yet when reading in school she read with great expression, intonation and seemed to have good comprehension.

There were minor upsets on a fairly regular basis, the occasional bigger meltdown and a sprinkling of refusal throughout each day, but as a whole she enjoyed school and the company of the other children. We had applied for a Statement of Educational Needs (now known as an EHCP) just before she entered Reception. It'll take a separate blog post to explain that process; in theory, this paperwork was supposed to stipulate the extra support which Sasha needed.

GOSH Testing

It was only a short time after the diagnosis when I first blogged about how we didn't feel Sasha fitted into the standard descriptions of autism. The main reason behind that was how sociable she seemed to be. My group of Spectrum Girls mums all seemed to have girls who were super intelligent and could express themselves well; they most probably had diagnoses of Asperger's Syndrome. Sasha didn't really sound like any of them.

Somehow, I stumbled upon the phrase PDD-NOS, which stands for Pervasive Development Disorder Not Otherwise Specified. Catchy, huh?! PDD is an over-riding term given to all spectrum disorders; it is a term which has now mostly been replaced by ASD. However it was the 'not otherwise specified' bit which caught our attention, and from there, via a lot more internet searching, we came across PDA. That's when we had the 'lightbulb moment', as we found PDA described Sasha so perfectly. Within six months we had taken this idea back to the paediatrician, hoping for answers.

We were told it wouldn't be diagnosed, and I wrote this post about it a while later. After much thought, we decided to ask for a referral on to see if somewhere else could diagnose PDA, and we ended up at a specialist clinic at Great Ormond Street Hospital. Of course I blogged about that, so for the detail look at these posts.

My two girls, reaching for the stars, about the time of the GOSH testing

Junior School and Mainstream Breakdown

I'm aware this update is a little long now so I'll try and summarise this period in a nutshell. Sasha was doing much better than I'd hoped in the mainstream school; a great transition plan was put in place and she moved into the new building which housed the linked Junior School, with new teachers. A brilliant Teaching Assistant with much experience of autism came to support Sasha for most of the time and together they found a way through. Sasha's classmates had been with her all the way through and were very understanding of her; she felt part of the group.

There were signs though, that it was becoming more difficult for Sasha. As the academic workload increased, she began to talk about how she didn't want to be there. By the time she began Year 5, Sasha was finally becoming more aware of how different she was to her peers and she found socialising to be a big challenge. She was unhappy, and this led to a Monday morning in June last year when she stopped short of the school door and told me that she couldn't do it any more.

Then followed a period of nearly nine months where Sasha remained at home while we tried to find her a new school place in a more suitable provision. Her case went to a provision panel twice before they agreed with our decision that the only school we felt worth trying was the local special school which happens to be a Learning Disability school. No-one is under the illusion that we think this school is a great fit for Sasha; even the school didn't think it would be. Sadly it just happens to be the only option available to us right now - I have of course blogged about the education provision for children with SEND (Special Educational Needs and Provision) in our county before now too.

New school start

Photo showing just how happy Sasha was to be going back to school

Two weeks before the Easter holidays, Sasha started at her new school, building up from half days the first week to full days the second. There were a couple of minor wobbles but so far she is happy to be attending. We will of course be watching closely to see what happens next, and are trying to support the school in understanding Sasha's anxieties a little more.

As part of this ongoing series called Our PDA Story, I've been reading the guest posts out in live videos over on my Steph's Two Girls Facebook page. Last week, Sasha asked if she could join me in the live stream and so I'm delighted that I can now share with you (above) an up-to-date video which includes Sasha answering questions posed to her by viewers during the session. I've always known that any video would be more powerful than my words in describing my beautiful youngest daughter to others. I'll do another live video this evening but have no idea whether Sasha will want to join me again or not... watch this space!

Yesterday, I helped out at the conference on Pathological Demand Avoidance which was organised by the PDA Society here in the UK. The PDA Society are a charity made up of volunteers who are all parents of children with PDA, and they have worked very hard to support as many other families as possible. Please do visit their website for much more information on PDA, and if you can support them in any way it would be much appreciated. I'm sure there will be an update about the conference very soon.

For all the other weeks in this series, please see the menu link at the top of my home page called Our PDA Story (or click on those words right there!). I suggest you start with week 34 and work backwards...

*** Throughout this blog there are lots of clickable links, and they mostly lead back to old blog posts of mine, written six or so years ago. It's actually really interesting to look back at what I was thinking in the early days, and they do give a great insight into our journey!***

For more information about PDA, please read the book shown below:

'Understanding Pathological Demand Avoidance Syndrome in children'

(this is an affiliate link and I may receive a small commission if you visit a link and go on to buy anything. It won't cost you any extra)

(Other PDA books can be found in my

'Books about the Pathological Demand Avoidance profile of autism' review post.)

To find out more about our experiences, please check out our 'About Us' page or the summary of our experience in Our PDA Story Week 35. If you are looking for more online reading about Pathological Demand Avoidance, the posts below may help.

Twitter: twitter.com/stephstwogirls

YouTube: www.youtube.com/c/stephcurtis

Instagram: www.instagram.com/stephstwogirls/

1 comment:

Nikki Benjamin5 September 2021 at 10:46
I’m finding this all quite a good read, my son is 11yrs old and has been out of school since February 2020 halfway through year 5.
He has this week just started a SEN school. He is 3/4yrs behind academically & dyslexia. Although following his ASD diagnosis in December 2019 I mentioned PDA he’s not got a diagnosis for it. He is extremely good at masking too!