Danielle and her children

As a single parent, coping with the restrictions of lockdown feels tough enough. The difficulties we face getting shopping or essential chores done when flying solo can feel like a relentless juggling of plates. Spending time wishing I had a partner to share the daily demands with has crept over me in waves of despair; sometimes it’s just the need to pass the reins to somebody else so the weight could feel less heavy. 

Yet somehow, I manage to cope with those set of circumstances (having my parents’ support with shopping and errands has been part of that success). Still, in my own mind set, I know that we can cope and we try to have fun together. My three girls love nothing more than playing a game together when the goal is united to make their mum the loser – this always guarantees them a prize of giggles!

Adding PDA to the mix

Caring and supporting a child with Pathological Demand Avoidance (PDA), adds additional plates to juggle as a parent and has been so taxing lately, that I have felt on the edge of parent carer burnout for the last few weeks. There are days that I wake up and hope to find a quiet moment to have a shower, or to wash my hair, but life is so unpredictable that some days I struggle to even use the toilet. I liken this parenting extreme to being thrown on a speeding motorway in the wrong direction, surviving on high alert, trying to indicate to move past any obstacles but the speed of reaction time being impossible to judge correctly.

So what is PDA? PDA is a lesser known profile that fits within the autism spectrum. Diagnosing the profile is still very contentious amongst professionals. There is a lot of controversy and debate over PDA in the medical community, however, leading research suggests that PDA has a set of features which determine the profile as requiring support/strategies that are different to those we may use for other autistic profiles.

An individual with PDA will still have the same challenges with navigating social communication and imagination, as well as having quite rigid thinking of routines and thought patterns, but they often have a surface sociability that can mask their lack of understanding underneath. The overriding key feature is that the individual is driven to avoid everyday demands and expectations to an extreme extent – which is always rooted in high levels of anxiety to need to stay in control.

My family

My eldest daughter, who turns nine this week, has had a diagnosis of PDA (although worded differently as our county will not use the term PDA independently) for four years. She has a middle sibling of seven, who acts as her facilitator and supporter, often carrying duties that are way beyond her years. She also has a younger sibling, aged three, who is displaying some of the difficulties my eldest had as a young child, and who both trigger one another constantly. Both the middle sibling and I find we are putting out the burning fires to ensure the family can remain calm – when an explosion happens it can be very high risk. Safety is the number one priority and trying to help everyone (myself included) to self-regulate is exhausting work.

For our family, lockdown has been very similar to normal life at weekends or during the holidays – we are used to being housebound. 

It’s like we’ve had good practice to survive this situation because my daughter refuses to leave the house most of the time and has done so for many years! 

Sometimes, mentally, this is easier because other families are in the same boat. The ‘new normal’ was just our ‘normal normal’ if that makes any sense. For the first time ever, I have no pressure to go out or to be doing the expected fun, family outings because the lockdown eases my conscience. My ‘normal’ is usually invaded by pictures and adverts of all of life going on outside of the house, the feelings of envy or frustration mounting, and it can make me feel full of  parent failure because we are all trapped. There is always a misrepresentation of what I feel my daughter should ‘need’ or ‘want’ to be doing, to how she actually feels. Learning to go with the flow and not have expectations is always a learning curve for me – my estimations of what is essential has altered over time.

Missing her routine

Many other families with PDA are often seeing an improvement from their children or young people because the demand from school has been eased. Taking that pressure off has made them feel better as they don’t have the weight that is carried with trying to fit into a system on them for a brief moment of respite. It can make us re-evaluate what is paramount to their needs; the tradition of following state education or looking after their wellbeing? I think the latter part of that question answers itself entirely.

Our situation hasn’t been like that, as in true PDA fashion, my daughter is autonomously moving in her own direction. She has had a traumatic school history; including multiple exclusions, school moves and experiences of absconding that she has had a broken educational record so has spent most of her schooling at home (whilst most other children she is in contact with were at school).

Going through the motions of a tribunal has successfully given her a place at an independent, therapeutic school specialised in working with children who have autism as their overriding need. She started the school in February and we were seeing a different child – being fully supported she was happy and starting to successfully shine. Just as she was managing the transition into full time schooling for the first moment in her life, she was halted. This has led to further confusion and frustration, resulting in high-anxiety from the break in her routines and challenging behaviour as a result. This added dimension has made the lockdown even more difficult for us to manage. She was desperate to go back to school in strong contrast to her sisters being excited to have the novelty of being home-schooled at last.

Understanding and compassion

I wrote a small Facebook post that went viral, talking about something that had happened near the start of lockdown. We had received a knock on the door from a police officer – it had been reported that we were not following the rules for COVID-19 so we had to answer some questions. It was soon resolved because the people entering our house were, in fact, our carers who have set hours of the day that they are employed to help out. The officer was reassuring, but it has added anxiety around leaving the house even further – something my girl just didn’t need. I could on one hand the times that she has managed to go outside the house since.

As always, understanding PDA as a hidden disability is often our greatest challenge and being blamed or judged often comes with the territory. 

However, being reported was a stark realisation that this is still one of our biggest issues and gives me more passion to write about the profile so that these situations do not arise in the future. Our greatest wish is to be accepted, socially, but being a neuro-diverse family means there are often some barriers to get past.

Finding my tribe

As a parent, finding my own ‘PDA tribe’ has been the biggest support network I could ask for – the community has kept us going. So many have reached out to offer support; from offering to help any way they can, to dropping a food parcel and activities off for the kids. A fellow PDA parent, who also writes a blog called Steph’s Two Girls, sent us a beautifully glass-embellished rainbow through the post as a present representing hope for the future. It is always those living with similar challenges who can reach the furthest and support you in your darkest moments. My advice for anyone is to always form a support network around you.

The same applies for my daughter, too. Through the blog we have successfully found some other children with PDA who have the same interests and connected them in a safe way remotely. What started nervously has led to some blossoming friendships that are beautiful to watch. They now play Minecraft together, video calling at the same time, as they learn to interact and play alongside one another. There have been some difficult moments to resolve, but with the support in the background, any issues have been ironed over by themselves. It’s ironic that she has made some valuable friendships by being in lockdown. Putting life on hold has enabled new opportunities. Listening to them chatting to each other about life in lockdown – whether it’s about pets or their favourite colour – is so uplifting as they learn new skills from one another via gaming. There have been moments of kindness and education between them and learning together is definitely a greater way to absorb new skills.

Screen time is on the up, but that’s the least of our worries and it has even given the younger siblings some respite. 

In those brief moments I try to give them some much needed one-on-one time, regardless of how little it may be. It’s essential to their wellbeing. Siblings can often feel like the forgotten children and I’m acutely aware of how little time is devoted to my middle girl. She is also usually the main point of control for the eldest, who needs to know where she is and what she is doing at all times, otherwise it causes huge anxiety overloads. Whilst distracted by gaming, it allows some respite for her sibling. The transition from gaming to something else is certainly a huge trigger point at the moment and shielding the siblings from colourful language is an added pressure!

So living with PDA in lockdown has brought some highs, but in juxtaposition, it has brought some crashing lows. We are all exhausted from not having much respite from one another and as a person I can feel the damage from parent-carer burnout. When I feel like this I know that usually my eldest daughter will be feeling the drain much harder than I am, riding the rollercoaster of her emotions is more than enough for any child to contend with, let alone with the added anxiety lockdown brings. Yet, somehow we are surviving, mostly from having the good fortune of friends and family around checking in on us. When we are struggling, I find it the hardest to ask for any help. We just have to try and remember this period of time is just temporary – the bigger picture of keeping families safe and well is the ultimate goal right now. 

You can read more about Danielle and her family over on her blog and if you need additional support, the PDA Society offers guidance and resources and a forum for families.