A new journey

2 years ago I created the ABC of Autism as a means of raising awareness of my fundraising efforts for We Are Beams and to raise some awareness about Autism. I became an autismDAD in 2013 but didn’t realise it until we got V’s diagnosis in January 2019 and what became quickly apparent is that, despite around 1 in 100 people being on the autistic spectrum, navigating your way through this journey can seem pretty lonely at times. I will never forget the feeling on that day in January when we got the confirmation we had been seeking for the past 3 years, and were simply handed a wad of leaflets and told to be on our way. So I created this site in 2022 and have endeavoured to maintain it since so that even if one dad in my position 5 years ago gets something out of the information I share it will have been worth it. I hope it will also be something I can share with Victoria when she is older to help her understand herself a little better when the time is right.

The Autism Show

Last year I attended the Autism Show at London’s Excel and was blown away by the amount of information that is out there if you know where to look. I wrote about it at the time here and remember going there to soak up as much as I could on all things autism so that I could be a better dad to Victoria, understanding her needs that bit more and being able to make the reasonable adjustments she required. My head was spinning as I left but it was extremely worthwhile though so yesterday I went again, but this time I had a slightly different motive.

1 in 5

If you have a child with autism there is a 20% chance that a sibling will also have the condition but it had never, ever crossed my mind that Emily might also be on the spectrum. Why would it? She’s flying at school, sassy, confident, well spoken and developing far to fast for my liking! And I know all there is to know about autism (yeah right!), so I knew she was as neurotypical as any other child that is 7 going on 17.

A year or so ago we started to spots signs of what we believe are ADHD traits. A kid that fidgets a lot, doesn’t stop talking and has difficulty concentrating on a task would be described as normal by most, but whilst I don’t believe in labelling kids for the sake of it, understanding what make them tick is important. She doesn’t need any adjustments to accommodate these traits but she might in the future, and knowing diagnosis can take years we started the ball rolling. Better to have a diagnosis and not need it than need it and not have it.

There are many ways to describe Emily but compliant isn’t one of them! Ask Victoria to make her bed or brush her teeth and she will immediately spring into action with a “yes daddy” but ask the same of Emily and you are either met with refusal or the 150 other things she needs to do first! At first we didn’t think anything of it but over recent months refusal and distraction have been met with outbursts, often violent, and full blown meltdowns. Not temper tantrums, but meltdowns (see here for the difference between a meltdown and a tantrum). Our personal situation at home hasn’t helped of course, but I saw this beginning long before the changes in our home life began.

Pathological Demand Avoidance

Through a dad I know at Fathers’ Club I first became aware of Pathological Demand Avoidance (PDA) quite a while ago, but knew little about it and had no reason to. But over the past year or so I’ve had this nagging thought in my mind: could Emily actually be autistic with a PDA profile? PDA isn’t a diagnosis in it’s own right but is a trait of some people on the spectrum. The National Autistic Society describe demand avoidance thus:

…the characteristic of a persistent and marked resistance to ‘the demands of everyday life’

The National Autistic Society

So when the agenda for this years Autism Show was released, I quickly looked down the list of presenters and exhibitors to see if anyone could answer my many questions and saw that Laura Kerbey, founder of PAST and author of The Educators Experience of PDA was giving a talk. I booked my ticket for that one 40 minute talk.

Strategies for supporting PDA-ers in the classroom

Laura’s presentation (entitled “Strategies for supporting PDA-ers in the classroom”) was eye-opening to say the least. She spoke eloquently and passionately about PDA and for 40 minutes it sounded as if she was talking about Emily. It was a lot to take in and the room got pretty dusty at times as I realised just how wrong my approach to Emily’s outbursts have been. I cannot do her presentation justice on this blog but I made some garbled notes on my phone that I will share here.

Very early on Laura said “if only they would put as much effort into doing the thing as avoiding it”. I’ve lost count of the number of times we have said that to Emily! It takes 2 minutes to brush your teeth but Emily would rather spend 10 minutes avoiding the task when asked. It just doesn’t make sense until you realise this isn’t a child being naughty for it’s own sake, it simply can’t be helped.

As I said before, we have suspected ADHD in Emily for a while, so it was interesting to hear that in Laura’s experience most with PDA also have ADHD. Autism often comes with friends and PDA and often takes ADHD along for the ride!

Quite often Emily will pretend to be a baby, talking and acting like a 1 year old. I’ve always thought it was cute, but eternally frustrating when she uses it as an excuse not to tidy her room because, obviously, a baby can’t tidy their own room! Yeah… that’s common in PDAers as pretending to be a baby or animal is a way of avoiding a demand!

Anyone that knows Emily will say she is very confident. Anyone that knows her very well will know that it’s a bit of a front. She’s sassy and confident in front of people but is actually very insecure on a number of fronts. It’s almost as if that assured, assertive behaviour is just a… mask. Another penny dropped as I realised everything I know about masking only scratches the surface of how this can be portrayed.

Those with PDA are often found to become obsessive with an individual. Not a celebrity or anything like that, but they develop an almost unnatural connection to a single individual and when they no longer see that person it can have a deep, almost grief-like effect on them. I won’t name them here but Emily has had and still has such an obsession. This is all sounding so familiar.

Many with PDA will often say a person is shouting at them when they really aren’t. Emily does this all the time, to the point I have questioned whether I really am shouting or not. In Emily’s world I was, even if the volume of my voice remained low. Another box ticked.

To try to empathise with someone with PDA Laura gave a very simple analogy. Imagine you are driving and the passenger next to you keeps telling you to “slow down, mind that car, turn left here…” – it would be a bit irritating right? Now imagine they kept grabbing the steering wheel to take control of the car – you’d feel scared, unsafe and downright angry. This is what those with PDA feel whenever a demand is placed upon them.

Emily has been attending counselling for the past 6 weeks and a lot of what Laura described has also been witnessed by her counsellor, which further validates my thinking. Despite being only 7, her counsellor describe how Emily feels a lack of autonomy in her life. No 7 year old has full control of their life and they are always being told what to do and not to do, when and how. But for a child with PDA you can’t just demand something is done and not expect a reaction. And to misquote a favourite film of mine: “An Emily reaction is quite a fucking thing!”.

What next?

A lot of the advice Laura gave revolves around how we communicate with people with PDA in order to get positive results. I know many reading this will say a child should simply do as their parents say, and that any pandering to them will turn them into a spoilt brat, but as I’ve discovered with Victoria on my first autism journey, language is important. My key takeaways for what to do next were to adjust the way I make demands of Emily. Rather than telling her to do something, I will try inviting her to join me in a task. Rather than “Emily brush your teeth” I will try “Emily would you like to come into the bathroom to brush your teeth”. If the result is that she brushes her teeth without incident then what’s the harm? She feels she has a choice and I get the result I need before the school run. Emily is very intelligent for her age so subtle demands will also be avoided, as will dismissing her words as untrue, two actions that can break trust. Next time she accuses me of shouting I won’t say I wasn’t because in her reality I absolutely was shouting so to say otherwise is calling her a liar.

Laura also kindly gave me some other practical advice for next steps that I will be looking into whilst also reading the signed copy of her book I bought whilst talking to her. Watch this space!

The rest of the show

I feel very bad for the fact that I hardly listened anyone else after Laura’s presentation, every word of what she had said spinning in my head and reaffirming my belief that my amazing, sassy, beautiful and intelligent youngest daughter might also be on the autistic spectrum. I will however call out the last presentation of the day by Pete Wharmby which was as funny as it was informative and just how I needed the day to end given the emotional rollercoaster it had turned out to be. If you ever get a chance to hear Pete speak please take up the opportunity because what he has to say about the most hostile environment is well worth hearing, where he describes a mainstream school as being the most hostile place for an autistic child, which could easily be made far less hostile with a few simple and free changes… whose idea was it to signal the end of a lesson with a loud, high-pitched bell?! Not someone with autism, that’s for sure!