Wired Differently

Our beautiful boy is finding life very difficult at the moment. He is a bundle of anxiety. All because his operating system is different, he’s wired differently. The world, especially the world of a four year-old, is not designed for people who are wired differently, it assumes we’re all the same and, if we’re not, seeks to re-program us such that we are.

His unusual brain drives his phenomenal curiosity and outstanding capacity for learning. As much as two years ago, I wrote about his pretty astounding capabilities. He has only continued to amaze us. He can read fluently and with comprehension, add and subtract, knows some times tables, can read 7 digit numbers, he can recognise most of the world’s countries by shape alone and probably tell you its capital and some of its administrative regions.

At one point, when he was just 3, he started independently learning the Cyrillic alphabet.

cyrillic

He is also incredibly creative and imaginative. He dictates lengthy stories to us which contain rich, engaging characters and invents games with complex rules. His logical problem solving, as evidenced by how quickly he tests and learns to progress on games like Cut The Rope, is well above his age range too.

But whilst his particular operating system means he is genuinely amazing in many ways, it also makes the everyday tasks of being a four year old – going to sleep, getting up, getting dressed, going to school, being at school, coming home from school, eating meals – near impossible for him to achieve.

His brain requires him to feel completely and entirely in control. When you are four, complete control is a rare commodity and ultimately, for his own safety, never entirely possible. Imposition of demands (direct, or implied, big or small, strong or gentle) create crippling anxiety. This can manifest itself in simple refusal, right through to a full meltdown where he loses control to such an extent that he is a potential danger to himself and others.

This is currently all exacerbated by the fact that the implied demands currently creating the most anxiety for him are bedtime and going to sleep. If he’s asleep before 11pm at the moment, we consider that an achievement. He is exhausted and on edge. And so are we. He used to love bedtime and sleep brilliantly.

This is Pathalogical Demand Avoidance (PDA), a condition on the autism spectrum.

We do not have a formal diagnosis, PDA is still seen as “controversial” so, indeed, we may never get one. We’re in the process or trying, but in a chronically underfunded NHS, it can take up to 2 years – and it hasn’t started well, expect a subsequent post on this. But there is no doubt in our minds that this profile describes exactly how our boy is wired.

We have long had our suspicions, but the challenges for him have become particularly acute since he started school. His curiosity meant the first few weeks were brilliantly exciting for him, but once the novelty wore off, he started to show the strain. Bedtimes became gradually more difficult. Journeys to and from school more challenging, he became more withdrawn, less willing to tell us about school, or talk to us at all beyond (literally) growling at us.

After two weeks off at Christmas where we kept demands to an absolute minimum, he refused to go back. Getting him to school has been a huge challenge every single day ever since.

When he is at school, he’s outwardly doing pretty well. He is just so desperate to be a good boy. “I try my best to be kind. I try my best to go to sleep” he told my partner the other day. But we believe he is “masking” (performatively hiding his anxiety to be seen to fit in) whilst at school – if you’ve ever tried to be someone you’re not at work you’ll know how phenomenally draining it is. Imagine being 4, being consumed by anxiety and doing all you can to prevent people seeing it. It’s no wonder things have become more difficult at home.

The school have been fantastically understanding, generous with their time and as flexible as possible to our needs. There is much at school that he enjoys. He’s made lots of friends, his classmates love him. But even in Reception where direct demands are relatively light, schools are built on implied demands. Wear the uniform, it’s lunchtime now, choose your lunch, eat your vegetables, play outside for this specified amount of time.

Imagine this if demands make you anxious and you’re still four so you have no understanding of it, but you see everyone else is fine with it. He’s also one of the youngest in his year, so he is really very little to be coping with all of this.

All of his incredible knowledge has been self-driven. He obsessively explores an avenue of learning for 4-6 months, then moves on to something else. We encourage it and we join in, but it is led by him, not us. This is just not how schools work.

I am a passionate believer in comprehensive education, but it’s hard to provide a comprehensive education to 30 kids when some of their brains work entirely differently from others. It doesn’t allow them to follow a single obsession of one child for 6 months, that is for sure.

It has broken him. Over the half-term break just gone, he has struggled to leave the house. Paces anxiously if he can’t have the comfort of a tablet to play on (a tiny world that he is very directly in control of via swipes and pinches). He needs his mum by his side almost constantly (when he realised she’d gone out this morning, he broke down in tears at the top of the stairs).

There are better days, we had a lovely day at the farm park and a trip to Think Tank for a couple of hours, but there are days where even getting dressed is too big a demand. I have lived with people suffering from depression. At times, it feels the same. Again, he’s just four.

Watching all this unfold as a parent is, of course, absolutely heart breaking. And it’s so hard to help. He needs sleep, but telling him he has to go to bed just triggers his anxiety. Society says he should be at school, but even mentioning it at the wrong time upsets him. Your natural instincts as a parent, all of the advice about parenting, is fundamentally about how to control your kids. We have one that needs to be in control himself. At times, it just feels impossible.

It isn’t, and in some ways things have got better. We’ve got better. But it’s really hard.

Above all, as parents, you want your kids to be happy and you don’t want their lives to be difficult. There will always be things he struggles with, not because there’s something wrong with him – there isn’t, but because the world has not been designed with him and people like him in mind.

We all must all work to change that – because, as described above, he is phenomenally gifted. To see those gifts go to waste would be absolutely devastating, not least because the world is pretty fucked and we need all the help we can get. We can not afford to waste anybody’s talents.

There are signs of hope that the adult world is slowly starting to wake up to neuro-diversity. But there’s a very long way to go.

With this in mind, it became important to me to start writing this blog again. This is not going to become a blog specifically about PDA or autism – there are people doing that already far better than I could, some of which have been phenomenally helpful to us.  But as well as continuing (or returning) to sharing my general observations on family life, there is this additional lens I will be using to frame them.

Maybe our experiences will be helpful for others? Maybe we can promote a bit of additional understanding? I do hope so.

But most of all, my brain is wired for logical argument and there are things, systemic, bureaucratic things, that even this early in our journey, it is so clear are fundamentally broken. Someone needs to talk about them such as they might be fixed.

There are some things that I am already consumed with a righteous fucking fury about and I will be writing about those. I will be writing the absolute shit out of them. So do please watch this space.

 

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5 thoughts on “Wired Differently

  1. Julie Gunn says:

    When I spent time with him I felt him to be a very special person indeed – highly intelligent with a quirky, wonderful view of the world and an amazing ability (for one so young) to communicate it.
    It’s such a great pity that our school systems fail children even with the care and attention of dedicated staff. No child of this age should be overtaken by such anxiety and I think it’s immensely generous and courageous of you to share the whole experience. I’ll be following – thank you

    Liked by 1 person

  2. Dana P. says:

    I hear everything you are saying. few things: i have a 24 year old with PDA. we just discovered it. We have struggled for decades with this not understanding him or knowing that there was a profile out there that fit him. All i can say is be very thankful you discovered this early as you can help him the rest of his life. Is there a montessori type school where you are where the children learn at their own pace. It sounds like your son is brilliant where as mine is intellilctually disabled. It is hard for a 4 year old to be in control. At our sons age we can let him control a lot more at least. Your child needs a special placement and perhaps a 1;1 ratio to accommodate his needs. is that availablle. also anxiety meds are helpful.

    Like

    1. Thanks for commenting, Dana. It sounds like you’ve had a really challenging time.

      A few people have mentioned we’re fortunate to have recognised this early. I think we’re privileged in a lot of ways actually. Not least how much more support there is around for PDA now than there was 20 years ago (although still a long way to go!)

      We’re exploring all the options with school – keeping him where he is, alternative schools and home schooling. I’ll share where we get to on the blog.

      Like

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