Pathological Demand Avoidance (PDA)

PDA is a little known syndrome that I’m still learning about and researching... everything I read and watch I can relate to...not a diagnosis of myself, but of my eldest child.

Yes, it’s a label - normally I’m ‘that’ mum who can’t bear labels, but sometimes, it’s necessary to have a name...it makes you feel less alone, less abnormal, less like you’re going flipping insane!

Let me tell you about my son (DS1...I’m still not comfortable giving out my kids’ names as yet). He is 8 1/2 years old...he doesn’t understand why he gets so angry at the smallest of things. He doesn’t understand why life feels so hard. He doesn’t know why some days he wishes he was dead (and I feel sick with fear and sadness when I hear him say those words 😢). I’m his mother, all I know is I must protect him to the best of my ability, no matter what.

Walking on eggshells is a daily occurrence in our house. From the minute he wakes up, we literally have no idea what the mood will be like. He sets the tone for the whole day, and for the whole family. Some days are good, a few are really good, but mostly it seems they’re bad...shit, that is hard to admit.

He can be as happy as an 8 year old should be, life is great...then a split second later, it can all change - where everyone is screaming at each other...and no one really has any idea why the atmosphere changed. An example: I was getting DS1 and DD1 (5 1/2) into bed one evening...I felt the whole day had been relatively easy. It was nice. It was pleasant. As the parenting books suggest, I thought I should make the effort to mention it “You know something, I feel like today was a good day” was all I said...well...if I knew those words would trigger a visit from Mr Hyde (of Jekyll & Hyde), I would have kept those thoughts to myself. His tantrum and meltdown went on for 40mins...screaming and hurling abuse, (he never swears or gets physical) but nevertheless, shouting hurtful things and being generally aggressive.

From very young, maybe 6 months or even younger, we knew our first born was a little different to other kids of the same age. We couldn’t put our finger on it...he needed entertaining the whole time, he rarely got involved in play dates...perhaps it was autism...but his eye contact was never an issue. As he got older, his speech was well developed (we did baby sign with him, perhaps that helped) and by 12 months old he was saying sentences. He just wasn’t showing the typical autistic traits...except head smacking...he would smack his head hard with his hand, in frustration. As it turns out PDA is indeed on the autism spectrum, but what works for autistic children, doesn’t work for these kids.

When he was almost 7, I decided we needed to start OT. I was concerned he would start to really struggle at school with the pressure of doing orals and assessments. As it was, he was finding getting through daily life a challenge and it was heart wrenching to witness this beautiful little boy acting like a grumpy old man with the world on his shoulders. Or even behaving like a spoilt brat. Homelife was terrible. We saw the OT for about a year and it did help in lots of ways...he had a few sensory processing issues which she dealt with. He became less of a defeatist in his personal quests, he was no longer quite so afraid of the dark or confined spaces...but it didn’t ‘cure’ him. He would still flip out at the smallest of things.

I recently enrolled him into an 8 week long kids’ workshop to help give him tools to cope with his emotions. He hated going (which was no surprise). He had to face lots of ugly feelings and emotions. So it was good for him to express it and maybe helped him a little with controlling them. But again, it hasn’t ‘cured’ him.

I first came across the term PDA a few months ago, completely by accident. I happened to notice a post, asking for advice on PDA, on a new Facebook group I had joined. I hadn’t heard of it before, my curious nature got the better of me and I looked it up... I could not believe what I was reading...99.9% of everything mentioned, was my son. I was shocked and yet greatly relieved that this ‘thing’, whatever it was, even had a name. Since my discovery, I have avidly read articles and watched videos relating to PDA and I’m more and more convinced this is what we are dealing with, and I have become more understanding of what is going on in his head and trying my utmost to be more patient.

The first thing I learned about it was that the ‘bad’ behaviour is all anxiety driven. It’s simple really. PDA sufferers need control and the slightest change sets them off. Spontaneity is out of the question...and forget about last minute change of plans...this will undoubtedly trigger a meltdown...so we have learned not to talk to him about any plans we may have until we are 100% certain it’s going to happen...actually we realised that a long time ago, but it’s only recently clicked as to why it would work.

So where do we start? We literally have no clue. We take each day as it comes until we can find a specialist who can officially assess him. Much of what I have read is based in the UK. So, my hope is one day when we get to visit my family again, we can get him to a professional who knows what we’re dealing with.

I just want a my little boy to be happy like he deserves to be...a kid who can enjoy life and not feel the world is against him.

I’ll add more to my story as time goes on...I’ll give snippets and insights of our daily lives and the many challenges we face. It’s an ongoing process...but journalling it in this way, I hope, will not only bring more awareness to this syndrome, but also help me to deal with this shit.

Happy steeming 😘