Our journey to PDA

I originally wrote this for Autism with lots of love and affection‘s #YourJourneyMyBlog series in 2017, before starting Notes on PDA. I thought it would be nice to finally add it to the blog roll and share again here as it was the first thing I ever wrote about Pathological Demand Avoidance and tells our story of how we found and recognised PDA in our daughter. We’ve come a long way and learnt loads about autism and PDA since writing this (see my other blog posts and Links page) but this was us then and where our PDA journey began.

I discovered Pathological Demand Avoidance (PDA), a behavioural feature of Autism after a google search last June (2016). I read the National Autistic Society’s description of PDA and I knew instantly that I had found the explanation of my daughter’s challenging behaviour and difficulties.

My husband and I had wondered whether our daughter was on the autism spectrum on and off for a few years (between the ages of 3 and 6) but we kept dismissing it and putting her behaviour down to age and personality. Our main reason for this was she was incredibly imaginative, affectionate and sociable and this didn’t fit with what we knew about autism. Plus she had hit all the developmental milestones from a baby (even exceeded some) and the health visitors never had any concerns in that respect.

In all truth, we had very little experience of the autism spectrum as nobody else in either of our families is autistic (besides our daughter) but we had friends with children on the autism spectrum and noticed similarities in some of our daughter’s behaviour and theirs but she never quite fitted the descriptions we read of autism.

The things that concerned us the most at the time were:

  • overwhelming emotional outbursts
  • her unwavering determination to not co-operate or listen to us
  • how demanding and controlling she was over everyone and everything (making basic tasks like getting dressed, leaving anywhere or getting in the car for example almost impossible – it was like she was stuck in the toddler/terrible twos stage).

After a particularly difficult day out with friends which ended with her hitting me and pushing me all the way back to the car, I analysed what had happened and it all came down to control. She couldn’t control the games her friends were playing, she couldn’t control that she couldn’t get on a swing in the park or that other children ‘ruined’ her game, she couldn’t control not hurting herself when she fell off the climbing frame or the time it took to get back to the car and home. A need to be in control was the driving force and the catalyst for most of her difficult behaviours. She would become overwhelmed when she didn’t have control and burst with emotions, she would ignore our requests in a bid to be in control and she would do all she could to control everything around her.

I wondered if there was a connection between her controlling behaviour and autism because my instinct kept taking me back to autism – she was rigid in her thinking, struggling with her emotions, very precise and particular about things and obsessive with her limited interests.

I was desperate to find an answer as to why she needed so much control and to find out how to help her because nothing we had tried had worked to alleviate this need in her.

I googled the question:

“Do kids on the autism spectrum need control?”

Where I found the NAS description of PDA, it was like it was written about her personally. We were sure she had PDA and finally, we had an explanation and better understanding of her and access to strategies on the PDA Society website to help her.

We read and watched everything available and joined several online support groups and realised we had already adopted many of the suggested strategies in the way we parented her from early on, like giving her choices, using humour and novelty to encourage her to do what was needed and being very flexible. We had recognised early on that traditional parenting and schooling methods would not suit her and worked to make her environment as nurturing and accommodating as we could for her individual needs. We decided to home educate her rather than send her to school for example and allowed her the freedom to learn about what she wanted to learn about.

So there really weren’t that many changes needed in that respect but having the understanding that she couldn’t help her behaviour or controlling nature and knowing that it came from a place of anxiety (something I had never fully recognised before but now suddenly made sense and was clear as crystal with hindsight) made it all the easier to do. We knew deep down what we were doing was right for her because nothing else worked and only made things worse but it was becoming harder and harder the older she got to justify it to others and accept that this behaviour we had put down to age wasn’t going away as she got older, that no amount of our gentle guidance and nurturing helped her develop (socially and independently) as other children her age were so having this validation and deeper understanding was empowering and the explanation that made sense of everything.

We initially thought we didn’t need to pursue a formal assessment because we didn’t need a professional diagnosis to access the support she would need at school as we home educated her and could easily accommodate her needs. But after more consideration, we realised that having the right diagnosis would benefit her throughout her life and give her a solid understanding of herself.

We decided to go to a private paediatrician and psychologist who had experience of recognising PDA and last December (2016), age 6 and a half she was diagnosed with Atypical Autism Spectrum Disorder with PDA features.

The relief that they could see what we could see and completely understood her was mixed with deflation that she had a life long condition that would cause her difficulties. Her reaction was “yay” – she had started noticing her difficulties and wanted to know why she felt the way she did and the confirmation of PDA gave her the reason she needed. Her understanding of what PDA or autism means is very basic but it’s enough for her right now.

Living with PDA is a challenge for her and for us as parents.

She’s limited in what she can do and where she can go in some respects, there are things she just cannot manage to do because her anxiety prevents her from being in situations she cannot control a lot of the time. We have had to cut back on social activities and she sees much less of her friends than she used to.

In order to keep her anxiety to a minimum, she determines most of our daily routine and what we do together which can be difficult and when something needs to happen it takes an incredible amount of effort to achieve. Bedtime is incredibly difficult, she resists the demand to go to sleep with all of her might and in order to keep it as calm and anxiety free as possible we try to give her as much control as we can and she’s awake until late which leaves no down time for us. Her mood is erratic and she is very explosive when things don’t work out and anxiety overwhelms her. To minimise this, we’re always thinking several steps ahead and trying to avoid situations which will cause her anxiety to rise by carefully considering our language and approach and preparing her for transitions.

The flip side of all of this though is that our pace of life is rather slow which is positive in this day and age and our daughter has the ability and opportunity to savour moments and enjoy every detail, enriching and expanding her mind and creativity. We in turn appreciate simple things and have achieved a new level of acceptance of people and situations and feel very fortunate that we have the opportunity to experience life through a new perspective, one we would never have experienced without PDA in our lives.

PDA has taught us acceptance, patience and understanding and I’m a better person because of PDA, my husband is a better person for PDA and our daughter most certainly is. She’s enthusiastic, honest, loving, caring, inquisitive and creative to name but a few of her qualities. She has so much to offer others and given the right environment and freedom to be herself she can fly just like the butterfly on the sticker she chose at the end of our appointment on diagnosis day.