This is our PDA story (Week 10)

I can hardly believe that we're already up to Week 10 of 'This is our PDA story'. This is just the teeniest tiniest tip of the iceberg of the number of families living with Pathological Demand Avoidance though.

This is a handful of brave parents who have found the time to tell their story about how living with PDA is very different to raising typically developing (also known as NT, neurotypical) children.

There are so many more parents and carers out there who are not being listened to; who are being blamed for the non-conforming and often challenging behaviour from their children. They are sent on standard parenting courses and given strategies which only serve to fuel the fire.

We've watched programmes like 'My Violent Child' and recognised the signs of a family that are doing the best they can, and of a child who has undiagnosed symptoms. We've seen the thousands of judgemental comments and tweets suggesting that all the child needs is a good slap. These things have in fact been said many times, in person, to parents of children with PDA, even without using social media to hide behind.

The parents are often totally unaware of PDA; their child may or may not have been diagnosed with autism. They haven't yet stumbled across the right website, or the supportive Facebook groups where they can see they are not alone. This means they are sadly not being supported in any way, or offered the right help or advice, and my passion is to try and spread the word and help others understand, so that they and their children are not judged but are instead helped.

The writer this week could almost have been dictating how I feel. We are about to go through the round of parent consultations with both girls; we have had Stampylongnose (Minecraft YouTuber) on repeat for what feels like years, friendship issues are a high priority currently, and as our youngest girl went to bed tonight, she told me 'you know, the most difficult thing about my life, the thing I just can't do, is.... wait'. That came just after 'I just like to do what I like to do. The reason I like to be at the front all the time is that I can see better. And no-one is walking backwards, bumping me'.

It may not be easy for us as parents or carers, but it's definitely not easy for our children either. We just want to help them as best we can.

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It’s the season of parents’ evenings, and Facebook is filled with lots of proud posts – and rightly so, raising any child is challenging enough and successes should be celebrated. But when the success I’m celebrating is that K hasn’t hurt any of his classmates or any of the teaching staff for a few weeks, and is actually joining in for some of the lessons (rather than running around or hiding under the desk) – that doesn’t feel like the kind of post that might get multiple ‘likes’. I KNOW Facebook is a lie – nobody’s life or children are perfect. And sometimes I wish I was more open about the challenges our family faces, but when you have a child like K your world tends to shrink and you end up lurking only in the places you know you are safe and accepted.

K has really struggled at school this year, and we’ve been lucky to have professionals that all recognise that he has a very PDA profile (his official diagnosis is high functioning autism, or Aspergers as it once was). The recent successes at school are down to the head, his teacher, the SENCO, the Autism team and his paediatrician all devising and implementing PDA-specific strategies (making it feel like he can choose if he joins in or not; not forcing him to if he says no; more 1-2-1 support).

A lot of families really struggle to get the help they need – and often the most useful advice isn’t from professionals, but the stuff you seek it out for yourself (at 2am, in desperation); and it’s mainly on the forums, discussion boards and support groups that are set up and run by parents who have been through this themselves. When I tentatively posted about my concerns about K at 18 months I was advised that I would have to fight for any support he might need and only I would have his best interests at heart – ‘Surely not’, I thought, ‘if he needs help he’ll get it’. But it’s one of the best bits of advice I’ve ever had. I often wonder how the parents of PDA children must have felt before the internet existed to connect us all together. It must have been so lonely out there.

In certain situations, when he’s calm and happy (and mostly when he’s with me), K can be absolutely charming and lovely. This is the real K – the K that well meaning friends say ‘well he seems fine to me’ about. But when his anxiety is high, he’ll avoid most demands made of him. I’ve become like a professional poker player over the years, watching for his every ‘tell’ - the glint in his eye that means he’s heading to sensory over-load hyper mode, the build-up to a massive refusal meltdown. Even before I’d heard of PDA I’d realised that certain strategies; make it a game (that he always must win); make it a race, worked better than others. But only sometimes!

K has always found waiting for anything impossible – so slowly I’ve adapted our home life to accommodate this. I know how to time a request so it coincides with the end of a ‘Stampy Minecraft Let’s Play’ video (arg!). Adapting our home life has caused heated debates between my husband and I – he thinks it’s creating an unreal situation and real life is not like that – it doesn’t bend to your will and accommodate around you. But at home K is far less stressed and less PDA-like than at school. Often PDA children mask at school and then explode at home –but K is the opposite. In a way this has meant that we’ve been able to access support that others have to really fight for – but day-to-day life is still challenging as he struggles to stay in control all times, and I can’t help wonder how long mainstream school will be able to accommodate this. And he really hates school; just getting him there can be a challenge in itself.

What K really struggles with is friendship. He wants friends, but doesn’t really know how to conduct a friendship (he’ll just talk endlessly about his current obsession), and he also becomes possessive over (perceived) friends, and can be aggressive towards other children he sees as trying to take his friend away – he wants them all to himself.

He can also develop negative fixations on other children, where he becomes annoying and provocative towards them, and once he’s entered into this cycle it can be very hard to break it.

As a parent of a child like K you have to develop a tough skin, which is one thing I’ve really struggled with. It’s hard when you know that other parents have been into school to complain about your child, when you’re doing absolutely everything in your power to access help for him, and read every book going in the hope of a magic solution (there isn’t one). But it also makes you into a fighter. I’ll always be there to defend K.

I would like to end positively, and say that parenting K has opened my eyes to many things. I was a very compliant child, and meekly did everything I was asked to do. K challenges everything and therefore forces me to question things too – especially when it comes to the education system and why things are done in the way they are. The system works for the majority of children, but K is a square peg in a round hole – and why should I force him to be something he’s not? He sees the world in such a unique way and in later life we encourage and embrace this – think out of the box! – but we expect all children to fit one set mould.

K is very bright, but PDA has meant I have adjusted my hopes and dreams for his future. My main priority is ensuring his mental health stays robust, that the anxiety doesn’t win and that he’s never, ever made to feel as if he’s a failure or wrong for having a brain that likes to do things its own way.

Ultimately I just want him to be happy – which I’m pretty sure is what every parent would wish for their child.

And I am very proud of him.

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As always, please do leave any comments of support below as they are much appreciated, and really help to let the writer know they are not alone, and not being judged.

For more reading, and different experiences, please check out previous weeks in this series by clicking below:

Week 9

Week 8

Week 7

Week 6

Week 5

Week 4

Week 3

Week 2

Week 1

Please do also visit the website for The PDA Society, www.pdasociety.org.uk, where there is much more information, and also www.thepdaresource.com.

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?