Pathological. Demand. Avoidance.
3 years ago, when my son was 3 years old, I came across a programme on Channel 4 called “Born Naughty”. As someone keenly interested in child development and having an extremely strong willed child myself I was definitely interested in watching it. I remember in one episode seeing a little girl called Honey. She was quite explosive and I remember seeing a clip of her throwing teddies at her dad in a rage and me thinking “oh he obviously needs to be lot firmer with her, it’s his fault she’s like that.” Honey had been excluded from school due to violence and during the programme went through assessments and was eventually diagnosed with PDA, part of the autism spectrum. “Oh”, I thought, “I haven’t heard of that”.
Having worked with autistic adults, I only thought of autism as the non verbal type with learning disabilities. My eyes were opened and as months went by and my son became more and more challenging did I have to well and truly eat my humble pie and accept the reality that my son may also have this neurology.
We’re now 3 years down the line and after a lot of research, experts sought, money spent, we’re well and truly clued up with this PDA malarkey, and I am thoroughly ashamed at how I judged Honey’s parents at first glance.
So, I write this to say… If you see a child acting differently or obnoxiously or aggressively in public, please stop and think before you judge. That child may well have needs that are invisible and are likely trying so nuch harder than a typical child without additional needs. It’s so easy to judge. It’s much easier to blame the parents. It’s much easier to think “my child would never do that”.
Think outside of the box. All behaviour is communication. There is always a way to help, rather than standing on the sidelines and judging.
And there’s that age old saying, “In a world where you can be anything, be kind”
We just had a perfect example of PDA in it’s complexity of someone avoiding something they want to do.
I had a box of doughnuts and offered N one with the expectation that he would be excited as we don’t have them very often. He ignored me and walked away.
The moment the demand (expectation) disappeared, he was able to then go and take a doughnut of his own accord.
I don’t understand what actually happens in his brain, but I’m convinced that as brain scans get more advanced one day we will find out. At the moment I imagine one part of his brain battling against the other. “I want a doughnut, Mummy thinks I’m going to take a doughnut, I can’t take the doughnut, but I want a doughnut.” How frustrating it must be!
At only 5 years old I’m already noticing him creating his own strategies to get around the Demand Avoidance in order to do things he wants to do (recently this was so that he was able to leave the house).
I’m so very proud of him and I’m so so glad that we understand where these behaviours are rooted. We’re already seeing huge improvements in his overall mental health, where the demands on him have reduced and he feels more in control. When N feels more in control of his own life, he then doesn’t feel the need to control others or the environment around him. I’m glad he is able to enjoy his doughnut 🙂
It will slowly drive you crazy
What if nothing and no one is to blame?
What if this is exactly how it is meant to be?
What if this was to make you stronger? To build your character?
What if this is part of your purpose?
What if you can help others?
Blaming serves no purpose
Acceptance is freeing
You are not broken
You are not damaged
You are perfect in your imperfections
You are exactly who you were created to be
Well this is a tricky post. Mainly because there will be some of you reading that likely have your own children with PDA or have PDA yourself and so know lots about PDA. Some of you will know very little if anything about this complex condition. I will just go with what comes out of my brain 🙂
- PDA is a neurological condition As in it is not learned behaviour, it is something they are born with and will not grow out of. It is how their brain is wired. Children with PDA can learn coping strategies and with the right support can grow up to manage their condition. Some will be able to live independent lives, hold down a job, run a home. Some will need more support than others. Early recognition and support is invaluable for the best outcomes.
- PDA (and autism) is an invisible disability As a parent to a child with an invisible disability you get reminded of this fact a lot. If my son was in a wheelchair, people wouldn’t question why we had moved to a bungalow so there were no stairs, or why we weren’t able to make certain social engagements because there wasn’t a ramp in place for our son’s wheelchair. It would be obvious as the reminder of my child’s disability would be right there staring you in the face. Just because a disability is not obvious to you doesn’t mean it is not debilitating to the person living with it.
- Not all children with PDA are violent This is a common misconception that people make because a lot of children with PDA are violent, often because they are unsupported and pushed to breaking point. All children have different temperaments and personalities. Some will fight, some will flight (run) and some will freeze. Some will do all 3.
- People with PDA sometimes avoid demands that they WANT to do. Now this is one fact about PDA that breaks my heart a little, and I don’t mean that to be patronising to anyone with PDA. But when you see your child want to go to a safari park but then part of his brain won’t let him go because he feels that he’s not in control, it really makes you realise that it is not a choice. It’s not something he can switch on and off. It’s not something he has control of.
- People with PDA need to feel in control to reduce their anxiety This is vital and something even I sometimes forget and then it comes back to bite me in the bum! As a parent this is not something that comes easy but if I want to ensure N’s mental health does not deteriorate (and it can do very quickly), strategies have to be consistently put into place so that he feels in control. This has to be fine tuned constantly so that when his anxiety is low enough, then we can increase demands to what he can tolerate. It’s a constant balancing act and pretty exhausting!
- People with PDA are really fun! N has a brilliant sense of humour, this was evident from a very young age. When he was just 1, he loved to make people laugh by doing funny dances. Now he cracks jokes all the time, some really bad ones! He loves people but finds it hard to understand social etiquette and so sometimes he is afraid to go out but this is something we’re building up his confidence about.
- People with PDA often have sensory difficulties Just like others on the Autism Spectrum, people with PDA can find it difficult to process everyday sensory information. This includes sight, sound, smell, touch, taste but also vestibular (balance) and proprioception (body awareness). N has particular difficulties with loud noise and struggles in crowds or even at home when we need to use the hoover or blender. He is also a sensory seeker so he needs lots of movement and wrestling type play. We recently got an indoor swing and it has been so helpful for N to regulate himself.
- Meltdowns are nothing like tantrums I hate it when the word meltdown is used out of context. Many parents say their child has had a meltdown, when in fact they’ve just had an emotional outburst (tantrum). A meltdown is a completely different kettle of fish. When N had his first meltdown aged 3 I had no idea what I was experiencing. All I saw was my little boy is complete distress, unable to hear me or regain control. It is one of the most distressing things I have to endure as a parent. It makes me feel utterly helpless as there is nothing I can do to stop it, it is just something to be waited out. Once it’s over, often N can’t remember what happened, or what he did during the meltdown. As distressing as they are for me to witness, I am well aware they must be much more distressing to experience.
- PDA is not that rare There are many people undiagnosed and often misdiagnosed (often with Personality Disorders, Bipolar, Oppositional Defiance Disorder, Conduct Disorder). Awareness of PDA is still very much needed so that children can get the right support.
- People with PDA can mask their problems This is a both a blessing and a curse. Masking is helpful to get through certain social events, the school day or a doctors appointment but it always, always comes at a price. Masking causes stress and exhaustion, and once a child is in their safe place or with their safest person, they often then explode as they feel safe to release all of the pent up stress. I remember one time I took N to a Birthday Party. He’d had a good time with no hiccups. We drove home in silence and we approached our house. As soon as he laid eyes on our house he had a meltdown in the car. That was the first time I was aware that N masked, he was 4 years old.
So there are my 10 things you did or didn’t know about PDA. Is there anything you learned that you didn’t know before? Is there anything you would’ve included that I missed? Would love to hear from you 🙂
So I’ve decided to do the Special Needs Bloggers 30 Day Challenge. I thought it would be fun and give me some inspiration.
I wrote in my blog post Rainbows as to why rainbows have always been so significant to me. The name A Different Kind of Rainbow came to me around a year ago when I felt inspired to write about the things that I was going through with N. It was during a particularly difficult time, he hadn’t been diagnosed and we were still unsure as to what was going on and how on earth we were going to make life easier. It struck me that I have always referred to N as my Rainbow Baby (as we lost his big brother before N was born) and that the Autism Spectrum is also signified by a Rainbow. See here for a brilliant comic strip explanation of the Spectrum http://the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/
So that’s how the name of my blog came about. It felt perfect. N has always been my Rainbow, from the moment he was conceived, but now he’s also A Different Kind of Rainbow 😉
Today I am thankful. I am thankful for the Internet, for support groups, for experienced paediatricians and psychologists, for freedom in our country to home educate as we wish, for access to healthcare, for understanding, for Elizabeth Newson (https://en.m.wikipedia.org/wiki/Pathological_demand_avoidance).
I am also thankful that I was blessed with a desire to learn, so much that when I am passionate about something, I have to learn all there is to learn about it until I am satisfied I have exhausted the subject. This is what I have done for the last 18 months, absorbed myself into the world of Autism and PDA, in the hopes that I could understand how to make life easier for us all.
Today I am particularly thankful that N is in a much better place than he was even just a month ago. He hasn’t experienced a meltdown in over 3 weeks, he is playing with toys, engaging, laughing, all things that most people take for granted in a typical 5 year old. That’s not to say he is “cured”. He still has an autistic brain, he still has an overwhelming need to avoid the demands that others (and often himself) puts on him.
This hasn’t been an overnight change. This is after months and months of careful communication, rebuilding trust, reducing demands, understanding sensory overload. Our lifestyle has had to be completely overhauled. Visitors massively reduced. Days out put on the back burner. I am thankful that I trusted my instincts, through all of the bad advice that wasn’t asked for, through the thousands of parenting articles I searched through to find that missing link, the link that never even existed.
I am thankful that we know about PDA, I am thankful that I knew he wasn’t naughty. I am thankful that he is teaching me so much about myself, and building my character and patience and strength. It is all so worth it. HE is so worth it.
I love Rainbows. They are just unbelievably beautiful and mysterious. The way they are rare and special and make people stop in the street in awe at their magnificence. The way they represent a special promise. For me they also have a personal significance.
N is a Rainbow baby, that is a baby born after a loss. When he was born I was unaware that Rainbows would carry a further significance for him, in the beautiful diversity of the Autism Spectrum. I spent the first 3 years of his life believing I had a typical child, albeit extremely strong willed and quirky! At the age of 3 and a half, he began having explosive meltdowns and it was becoming apparent that all was not as it seemed. 2 years on and although life is not what I imagined it to be, N is teaching me so much, about what is important in life, to stand up for what I believe to be right and true and respectful. To not sweat the small stuff. Patience, patience, patience!
So… PDA, Pathological Demand Avoidance in a nutshell ~ An anxiety driven need to avoid everyday demands. It is a subtype of Autism, and shares characteristics of classic autism and Aspergers but is also distinctly different. It requires a different way of life. Tolerance, acceptance, trust, and unconditional love. I’ve started this blog to document some of our journey, the ups, the downs, the inbetweens. Like the colours of the rainbow, there is beauty, difference and mystery. The result of rain and sunshine.