Sunday, 29 April 2018

National Stationery Week Review

The other stationery lovers among you will know that National Stationery Week is from 23rd - 29th April 2018, and it's a chance to shout about our passion! Oh, and that it is spelt stationEry not stationary... it matters. But that's the teacher's daughter in me coming out.

Not many people know this (I don't think), but my life BC (Before Children, come on, I'm not THAT old...) involved being a buyer of stationery. After studying Business and German at university, I moved into a research job first of all, and then via a period of working at Gardenex (a federation to help UK manufacturers export their product overseas) I developed an interest in the buying product side of business. My husband says it was the perfect job for me...

So anyway, from gardening equipment I moved on to sourcing homewares for a German catalogue called Heine, and from there onto buying stationery for a couple of different mail order office catalogues. My big breakthrough came when I snagged a job buying stationery and then toys for sale in Asda stores, and I later moved onto Sainsburys - see, I'm very topical given the news this weekend that there could be a merger between the two! 
group photo in front of Hong Kong skyline

Buying was definitely a full-time job, and it involved a lot of overseas trips. I sourced product directly from China, Taiwan and Thailand - exciting stuff when you're in your twenties but a tad more difficult to find enthusiasm for when you have children. The photo above which was taken in Hong Kong is sadly one of the few I have from those days. Much fun was had on the buy trips, from visiting soft stuffed toy factories to watching a random man standing on a table playing the musical teapot... you really had to be there.

So that was a very short nostalgic intro to what is effectively a stationery review post, but I thought somebody somewhere may be interested!
Cross pen in display box

I was sent a few items to look at for this week, and predictably, I loved them all. First up is a gorgeous Cross pen; pretty sure these never made it to the shelves of Asda but I've always considered them to be a premium brand and items to treasure. Lovely red case accessory too which means there's less chance of me losing it. I checked out the Cross website and you can now buy pens with trackers fitted - well worth considering I reckon!
Shaeffer ballpoint pen

A Shaeffer pen also came in the package and I loved reading a bit of the history about this company. An American household name which began back in 1920 and which featured a White Dot on the pens as their branding and mark of quality, this firm was eventually bought out by Cross just four years ago but continued as one of their brands. 
Derwent Intense blocks - art crayons

Next up is a product made in the UK, which I'm all for promoting. These Derwent Inktense Blocks have a lovely colour and texture to them and I know my youngest girl is going to really enjoy getting her hands on them. Incidentally, Derwent is owned by a company called Acco who I did work with a lot back in the day, though I remember them more for filing products.
calli creative duotip brush markers

Last but by no means least was a pack of Calli creative duotip brush calligraphy markers from the Manuscript pen company. Calligraphy is one of those skills which I've always wanted to master but never managed to find time for. It definitely helps if you have some good tools though - and there's plenty of ideas and inspiration on their website

Of course this is such a small selection of the vast array of stationery products available; let me know what your favourites are!

*Disclosure: I was sent these items in exchange for a review; all opinions are honest and my own.*

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Wednesday, 25 April 2018

Our PDA Story {Week 36}

Week 36 now in the series 'Our PDA Story', where other families have been sharing their experiences of life with Pathological Demand Avoidance. 

This week's story covers the real struggles in education for a young boy diagnosed with PDA, and the emotional impact on his mum. It sounds like there is a positive ending, but at what cost to everyone's mental health? 


 Theo was born in 2011 and he was just beautiful and perfect in every way. He was growing well and meeting all the usual targets set by the health professionals. We went to Sure Start groups and interacted with other families. At the age of 2 we found a pre-school we really liked so put him in for the 15 hours, and it went OK. 

We were expecting our second baby in July, so this gave Theo social time away from mummy and the chance to make friends. As time went on Theo's behaviour started to change. He wouldn't play with other children, he would get cross and not be able to sit on the carpet very well. He was also not wanting to use a potty and when dirty didn't want to be changed or to say he was dirty. So we had a meeting with preschool staff and we decided to put him on a TAC (Team Around the Child meetings) to support him. I contacted the health visitor and she said to leave potty training for now, with a new baby coming, and to keep trying a bit later on. 

Time went by and problems kept coming up in preschool. We would have meetings and kept a communication book between us. I went to the doctors and asked for advice and they passed us over to the paediatrician. TAC continued for a while, the school nurse got involved and the health visitor supported us too. Then we saw the paediatrician, not much came from it all and so we carried on. 

Theo is now 3, soon to be 4 and about to start school. Toileting is still a problem; he is not dry and soiling is still happening. We have been to see the doctor and they don't have the answers so it's another referral to the paediatrician. Theo goes for his trial days in school and they go ok but he has toilet accidents. I have a feeling something isn't right whether it be ADHD or something similar, but no one is listening and I'm trying everything thing I can to get help. Theo is becoming hard work and I don't have the answers, preschool are no help and the health visitor is not much help either. The summer holidays come and go, we have huge ups and downs with Theo and behaviours which we thought was tantrums and just being naughty, just not wanting to do as he was told and not wanting to use the toilet. 

So in September 2015 he started at the Primary school and things were ok but not great. I was working in a children's home so was here there and at home, and I start to get pulled in to the classroom after school to talk about Theo and how he is behaving in the classroom. As time goes on it got worse and so I gave up work as I couldn't cope with all the stress that was going on. It all had a huge impact on life for all of us. 

I was called most days from school to say that Theo had hurt someone or he had soiled and they won't clean him up. I needed to collect him which meant he missed the rest of the school day as I had to take him home to clean him. I contacted the school nurse about it all and together we tried it all, from getting cross and shouting to ignoring the behaviour to showing the mess he is in, the lot. Even a star reward chart was just not working. 

Everything that was going on in school was being recorded. The headteacher at the time would take Theo out of the classroom and put him in her office to get him to do work like he was naughty because he would not behave in the classroom. He was given some one to one time but it was not enough. 

There was one morning Theo had kicked off big time and hurt his sister 3 times before we had even left the house, so he was given time on the step to calm before getting in the car. Once in the car I was putting his seatbelt on and he slapped me so hard round the face it stung. I put my fingers on the bottom of his cheek trying to stay calm and said 'you don't hit mummy'. I dropped my girl at the childminder at 8am and dropped Theo at the preschool breakfast club at 8.20am. I then went to school to tell them about what had happened so they had an idea what sort of day they might have with him. 

I was at home talking to my mum on Skype (as she was living in Australia at the time) and at 11.45 I got a phone call from social services to say a social worker was on the way to school to see Theo. As he had a red mark on his cheek when he arrived in the classroom that morning, they asked if I could meet them at school or the hospital. My mum heard it all and I went to school in sheer panic, totally upset. I was beside myself; I got to school and Theo was in the office. The social worker turned up and there was no mark but they continued with taking him to see a paediatrician at Lincoln hospital anyway. 

I couldn't stop crying. Theo was so confused about what was going on. I just told her everything. At the end of the appointment we get back in the car agreeing nothing was of concern as Theo was already under paediatrician because I had requested it. The social worker told Theo that he could go home with mummy today! 

After this they started sending reports to the paediatrician about the behaviour Theo was displaying. We had meetings with all the professionals we could - educational psychologist, school nurse, ESCO and EHCP case worker, a behavioural specialist and now the social worker. The paediatrician gave us an appointment and she decided with the amount of evidence she had that she would give a diagnosis for Autism spectrum disorder with PDA. We walked away relieved we now had answers to why things were like they were. 

The meetings continued, the social worker was happy no more needed to be done, but the school nurse thinks Theo needs to be a "looked after child" and I should know better, as I'm qualified as a nursery nurse/ residential support worker for children who have been abused. I was so mad - how dare someone who sees Theo a few times and had no idea how to help say that? 

We set up a meeting with a special school to see the head teacher. She is amazing; she showed us round and talked us through everything and said how she could help us and Theo. Once we had seen the school we continued with the EHCP and reduced Theo's time at school to 2 mornings a week. We had been told other parents were complaining about Theo's behaviour towards their children. 

At this point my health went downhill and I was put on anti depressants to help my emotions. I hit rock bottom and some days I just sat on the sofa and cried or slept. I was on edge all the time, waiting for the next phone call to come about what Theo had done now. I felt dead and on auto pilot. I would be in contact with the special school regularly and they even offered to have Theo a few mornings a week to help, but the council refused the offer in case Theo didn't get a place there. In May 2016 Theo did get his place and it was the best thing we did for him. 

Theo is still under the paediatrician now, at the age of 6/7, to help with toileting. Things are ok but they are still hard. Some days I could just hide because of the bad day we are having. There are so many people who judge Theo's behaviour as being naughty because they don't know what is going on behind the scenes. Even family don't get what it's like to live with a child who has PDA - we are now as a family having to say NO we are not going to do that because the aftermath can be horrendous, and they are not having to deal with that. 

As a parent I believe I'm still grieving for Theo's diagnosis. I find it hard some days and I can become so angry with people and the attitude, so I just shout at them! I feel I have to shout the loudest to protect my son as no one else will. If Theo was in a wheelchair people wouldn't say anything but because it's not visible people judge. I hate PDA and the difficulties Theo faces everyday but we do the best we can and I hope my story can help others and give them light at the end of the tunnel. 


Thanks for taking the time to read. Comments are much appreciated and sharing on social media could really help get these posts to people who have still not heard about PDA. 

For more reading about what Pathological Demand Avoidance is, please see 'Challenging Behaviour and PDA', and for an idea of how to help please read Strategies For PDA

There's a chance PDA can be misdiagnosed as ODD (Oppositional Defiance Disorder) but there is a distinct difference. More information can be found here: the difference between PDA and ODD

A variety of experiences of living with PDA can be read using the link This is our PDA story

If you feel up to sharing your own experiences with my readers to help spread understanding (this can be anonymously), please email 

The PDA Society webpage has a huge range of information about Pathological Demand Avoidance, and there are also links to info on the PDA Resource website.

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Tuesday, 24 April 2018

When we first discovered PDA

Last week I published a blog post featuring a very condensed version of our PDA story; a run through some key events following Sasha's birth. There was so much more I'd have liked to include but I was very wary of boring everyone. My aim from that post was for people to watch Sasha answering questions on a Facebook Live video with me, as I think that gives more of an idea of how she is now than I ever could with my words on this blog.

Whilst pulling that last post together, I went back over some older blog posts of mine. It was so interesting to read my thoughts from those times, as a lot of them capture Sasha's personality and characteristics from when she was younger. I wrote the following post in the early days, after the autism diagnosis but before we had heard of Pathological Demand Avoidance, and it highlights how we first began down the short path to stumbling across that diagnosis: 

February, 2010.

Stephs Two Girls in big cardboard box
'I am wondering, given the past week of good behaviour, if people think I make things up about Sasha - in fact I sometimes wonder if I'm imagining things myself! Makes me feel a bit alone to be honest - no-one else really sees her for as much time and as constantly as I do, and her behaviour is obviously different towards different people, especially if she thinks I'm not around. What am I doing wrong, or is it just that all children know how to play their mums?! However the books I've read on the subject do suggest that improvements come in spurts rather than consistently, and this is probably how it is for now. 

Sasha has quite a few good phrases now, even if the language isn't all that clear - including 'there he/she/it is' and '1-2-3-wake-up' if we're pretending to sleep. 'Home sweet home' is my favourite phrase of hers though, I love to hear that. I did laugh a lot when I went to collect her from nursery on Friday and they said she had resolutely refused any tea, pushing it away (something she has eaten happily several times before!) but instead had sat there singing 'twinkle,twinkle,chocolate bar' (instead of little star, obviously). She does that at home also, generally at the top of her voice, and that's another thing that always makes me smile. When home last weekend she happily sang 'happy birthday' to her nana, and even quietly went and got the bag of presents to give to her of her own accord! The fact she wanted to open them may have had something to do with it though.... 

I need to go and do some more reading now, in preparation for our next meeting with the paediatrician (lunchtime on Thurs). I have in my mind something about PDD and how that might be Sasha - here I'm copying directly from the NAS website... 

"A dad once observed that his son didn't have autism but PDD-NOS: Pervasive Developmental Disorder Not Otherwise Specified. "I just wish he had something I could pronounce," he added wryly, "something someone has heard of." Such exasperation is understandable given the somewhat cumbersome and commonly misunderstood acronym, PDD-NOS, which describes a specific pervasive developmental disorder. A child may be diagnosed with PDD-NOS if he or she shows some behavioural features of autistic disorder but does not meet the full criteria. All of the listed PDD are part of a spectrum of overlapping conditions. To illustrate this, a child may begin with a diagnosis of PDD-NOS, develop more autistic features with age, and be re-diagnosed with autism or another pervasive development disorder; conversely, a child with autism may improve and be re-diagnosed with PDD-NOS.'

As Sasha does seem to recognise and show emotion, and can interact very well with people she doesn't know all that well (when it suits her), I'm wondering if this is how she may be diagnosed. My worry at this stage is still that Sasha is not 'bad' enough to get help which she may well need desperately when starting school, and I'll do everything I can to make sure that start will be as smooth for her as it was for Tamsin.' 

The photo above is from around the same time as this post was written; I remember that day clearly as both girls spent about an hour giggling, whilst playing in and popping up out of that big box! Lots of interaction and lots of being social on Sasha's part, and so, lots of internal debate about the autism diagnosis from me. Sasha just didn't seem to follow the 'typical' autism rules.

Other posts I wrote in the first year explain this type of behaviour without being able to put a finger on it; Tears and Tantrums for the EYAS was one and in More Ups and Downs I talk about Sasha's perfectionism and not wanting to take direction. Later in that year I wrote about how we were applying for a Statement of Educational needs (now known as an EHCP). After an initial setback, Sasha was 'awarded' a Statement; in other words we gained a lot more paperwork and the opportunity to meet with people involved with her at least once a year. The following year I wrote about the Statement process inching along. I haven't yet found a post describing exactly how it felt when I very first found out about PDA, but I do know it was a lightbulb moment. Two years after her diagnosis of autism, I first tried to explain Pathological Demand Avoidance to my readers.

Life was good back then; it had its ups and downs of course but we managed, and it wasn't all doom and gloom. It's still good now; it may not be plain sailing all the way but I've got used to the fact that there's never a dull moment around here and I love every second of it!

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Thursday, 19 April 2018

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).
logo for our PDA story series

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 aged 6 months
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!***

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Tuesday, 17 April 2018

Does my child have Pathological Demand Avoidance?

Lately there seem to be more and more parents asking about whether their child has Pathological Demand Avoidance. Sometimes a question is posed as to whether PDA is actually a real condition, given that so few practitioners seem to diagnose it, so I thought I'd try and throw some light on it all.

What is Pathological Demand Avoidance (PDA)?

First, let me try and explain in a nutshell what Pathological Demand Avoidance (PDA for short) actually is.

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/high-functioning autism* and classic autism (occasionally known as Kanner's Syndrome). 

Taking a step back from there, 'autism' is now the over-riding term most commonly used when talking about autism spectrum disorder (ASD). There's unrest at the idea of calling this a disorder though, and some prefer to use autism spectrum condition (ASC) instead, but generally this spectrum has been shortened to autism. This has possibly led to some confusion, as classic autism is one of those sub-types of autism... I'm hoping this image shows a bit more clearly what I'm trying to explain:
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.

The characteristics of a person with Pathological Demand Avoidance are:

  • resisting and avoiding ordinary everyday 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. 

The history of PDA

Elizabeth Newson was an international expert in autism who first identified Pathological Demand Avoidance (PDA) back in the 1980s. Her first peer reviewed publication on PDA appeared in the British Medical Journals back in 2003, entitled 'Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders'. In 2010, PDA research led by Francesca Happe began at Kings College in London and more research by other eminent practitioners was published between the years of 2013 to 2015.

So if we consider that Asperger's Syndrome was first described in the 1940s, forty years previous to PDA, but only really began to be talked about and discussed more in the 1980s, then we can see that Pathological Demand Avoidance is following a similar trajectory.

Does my child have Pathological Demand Avoidance?

This question often comes from parents whose children are diagnosed with autism or who are suspected to be autistic, because some or all parts of the three main areas of difficulty have already been identified. So this could be problems with communicating, or struggles to relate to other children of their own age, or fascinations with certain unusual areas of interest, for example.

For these parents I'd suggest Comparisons to other profiles of ASD as a starting point, and then the Extreme Demand Avoidance Questionnaire (EDA-Q). This is a ticklist which would give an indication of whether someone might be considered to have PDA. It is not a diagnostic tool on its own but can be very helpful in highlighting where a child may experience differences from their peers.

Can you have PDA and not be autistic?

This question about PDA is asked by some who don't believe their child is autistic. So far as research has shown up until this point, it is assumed that PDA is a condition which is part of the autism spectrum - that is to say, you cannot have PDA (or be a PDA-er, a term also used) and not be autistic.

However some PDAers may be so good at masking that their autistic characteristics are difficult to spot. Indeed, some of the PDA characteristics are so different to those of others on the spectrum - for example, appearing sociable and being comfortable with role play - that they can hide the real needs and the underlying anxiety.

The image below, created by the PDA Society, shows the autism spectrum conditions in the middle, in blue with overlapping circles. The conditions in green are what is known as co-morbid conditions. That means they can be present alongside autism spectrum conditions, but they can also be diagnosed alone.

Demand Avoidance or Pathological Demand Avoidance?

The previous section leads on to the subject of demand avoidance as a whole, and how we determine who actually has PDA or where that 'line' can be drawn. Many children show signs of demand avoidance in its simplest form - that is to say, not doing something adults want the child to do which the child themselves doesn't want to do. 

The difference for those with PDA is that it is an inbuilt need to avoid demands due to extreme high anxiety, rather than a wish to not comply or a desire to be awkward or oppositional (which could sometimes be done for attention). 'Can't help won't' is a phrase often associated with PDA.

There is a separate condition known as Oppositional Defiant Disorder which was first defined in 1980 - interestingly around the same time which Elizabeth Newson was doing her research. There is still much discussion and research to be done as to whether ODD is a valid diagnosis. In my post 'The Difference Between PDA and ODD' I cover all of this in a lot more detail.

Just like other children, many autistic children can display demand avoidance at some level too. For example, those who experience difficulties with different sensory environments are likely to resist activities or daily life which affect them badly in a sensory way. When being taken out of their expected daily routine without the correct preparation, those with classic autism or Asperger's Syndrome may become distressed and try to avoid the new activity. Neither of these examples are the same as Pathological Demand Avoidance though. 

Pathological has a few meanings if you look online; unable to control part of their behaviour, extreme in a way that is not normal, or relating to or caused by a disease are just a handful of those. Some actively dislike the term 'pathological' and wish it hadn't been chosen. They suggest that 'extreme' should have been used instead. Extreme is a good word in this instance; those with PDA will sometimes go to extreme lengths to avoid everyday demands. They may be unable to agree to go and do their favourite activity even if they would actually really enjoy it, if a multitude of other demands have been placed on them that day and they no longer feel in control. 

It's not a case of choosing not to, it is being physically unable to cope with the level of demands. Careful planning and strategies are needed to get around this, and there should always be an escape route, or Plan X, Y and Z if necessary. Sometimes parents become such experts at using the strategies that their actions are barely noticeable. 

Does PDA actually exist?

Lately there seem to be a couple of people popping up who are actively trying to disprove the idea that PDA exists. I'm not entirely sure why; whilst I agree that it is always good to carry on the discussion and research areas such as this further, I have no idea why anyone thinks that society would benefit from removing this category and assuming that all autistic children can be supported by using the same broad strategies.

Most of my blog is dedicated to trying to explain how Pathological Demand Avoidance presents in our girl and so of course I am not going to be agreeable to the idea of removing these words as a descriptor. There is a blogger called Riko (who happens to be autistic) who has written a great post in answer to the attempt to discredit PDA as an idea. I strongly suggest you read that rather than me attempt to explain the mistakes in any other way - her post is called 'Please stop hurting PDAers'.

I don't want to come across as evangelical in any way but I am passionate about trying to help other families who may be struggling. Sharing information about PDA strategies which are not aligned with typical parenting strategies is my main goal; I think society has been obsessed with the idea of supernanny and that there is only one way to parent (control) children for too long and it's about time there was a shift in thinking.

Our experience

Our girl was diagnosed with autism at the age of 2 and a half. The autism diagnosis made sense to us in some ways, but it didn't seem to give a full explanation of all of her behaviours. It was a couple of years after diagnosis when I stumbled upon the PDA contact forum online (now known as the PDA Society) and we experienced our 'lightbulb moment' when reading all the characteristics which were said to fit this condition. It felt as if we were reading about our own daughter. Within another couple of years we had Pathological Demand Avoidance behaviours added as a secondary line on our diagnosis and thankfully this has been accepted by everyone involved in supporting our girl so far.

I'm one of only a handful of people blogging about PDA, but I appreciate that doesn't make me an expert. I can say that I'm an expert in my own child, as I know and understand her better than anyone else does due to the amount of time I have spent with her. As she matures, she will hopefully understand herself better too and be able to communicate more easily to help us understand even more.

Whilst running training courses on behalf of the PDA Society for parents who suspect they have a child with PDA I met with a variety of parents and also adults diagnosed with PDA. In the eight years since our girl was diagnosed, I've spoken online with many other parents and adults diagnosed with PDA. Many of them have shared their experiences in my blog series called 'Our PDA Story'.

Whilst I suspect there are more children who would be diagnosed with PDA given the right assessments, and if parents were listened to more closely, I don't subscribe to the idea of many parents 'jumping on the bandwagon'. PDA is a set of characteristics which need support in a very specific way; it is certainly not easy to constantly and consistently uphold PDA strategies.

I think it's important to address the thorny issue around the word 'naughty'. Jane Sherwin wrote a brilliant book titled 'My daughter is not naughty' which sums up their family's experiences. It is occasionally suggested that some parents appear not to be able to manage their child's behaviour because they don't impose the right boundaries. As with the well-documented Disney ride pass systems, there may indeed be some who try to cheat the system; a small number of parents might not want to put stricter boundaries on their children and subsequently see behaviour getting out of control, then think that jumping to the PDA conclusion is an easy option. However, I believe that if such parents exist, they are in a minority. Practitioners should be trained to listen carefully to the full story from parents who appear to be struggling, in order to determine what the child's behaviour is trying to communicate. 

Some parents experience violent and challenging behaviour from their autistic children with (and without) PDA; for those parents I recommend a website set up by Yvonne Newbold which offers much support.

As always, the first place I suggest anyone turns to when looking for information about Pathological Demand Avoidance is the PDA Society website. There is so much information on there, including a great post about the diagnostic pathway for PDA. Another useful website is the PDA Resource website. 

For further reading in book form, I've listed the books on PDA which I found most helpful when we started looking for more answers. If you have any further questions, please feel free to ask in the comments or via one of my other social media contacts.

If you've found this post helpful it would help so many more families if you choose to share it in some way. Likewise, my post on Strategies for PDA (Pathological Demand Avoidance) could help others, and the section titled PDA Info (at the top of my main page) has more posts with information about PDA.

*a note to say that there are many who dislike the term 'high-functioning' autism and I agree. As I understand it, one of the conditions of an Asperger's Syndrome diagnosis is that there was no significant delay in speech or cognitive development at a young age, so this doesn't cover a whole group of children who are academically able but whose speech was delayed. To avoid this post becoming too long, I've tried not to go into too much detail on this language issue here.

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