Thursday 2 April 2020

This Is Our Autistic Girl: World Autism Awareness Day 2020

World Autism Awareness Day 2020. Ten years ago I was thrust into the world of autism when our youngest daughter was given her diagnosis, at the age of two. She's 12 now. Rainman was the only version of autism which I'd seen up until that point and, like most people I suspect, I'd only watched that film for entertainment. Since then I've learnt so much, and yet I'm very aware that there is still so much more for me to learn.
image of our daughter, with words 'this is me' and attributes charming witty sociable loving caring chatty imaginative creative passionate determined autistic
Our daughter is nothing like Rainman, of course. She's also nothing like the 'stereotypical' version of an autistic girl which has had increasing press recently; she doesn't mask to fit in. And she's nothing like the 'classic' autism presentation - and by that I mean that her language and understanding is on a par with her peers, she doesn't appear to have repetitive behaviours and it wouldn't necessarily be obvious that she's any different by spending a couple of minutes with her, on a good day.

I still don't think I've met another child like our youngest daughter - but then surely every parent would say that about their own child? We are all unique individuals, autistic or not. However what I did find, a year or so after the diagnosis, was information about a type of autism called Pathological Demand Avoidance (PDA). There I found a group which our daughter had more in common with than most. The individuals within this group can be different from each other too, but at ground level they are all autistic and all struggle with extreme levels of anxiety.

Over a few years I ran a series on my blog called 'Our PDA Story', where other families and individuals with PDA talked about their experiences. All very different, but with the same underlying challenges that come from having Pathological Demand Avoidance. The national PDA Society is run by volunteers who all have members of the family with this type of autism, and the PDA Society website at is packed full of great information worth checking out. The post About Autism & PDA is a good starting point.

So how would I describe our 12 year old daughter to others? There are many positives; she is often witty and entertaining, she has an amazing imagination and at times a huge amount of enthusiasm. She's curious, creative, kind and caring, loves a joke and has an amazing memory. 

Her current loves are Nintendo and Steven Universe. She's a gamer girl who is very accomplished in Kirby, Splatoon, Minecraft and Animal Crossing, with a bit of Mario on the side. She's also an artist who has drawn several characters and she loves media and animation. 

The biggest challenge for our girl is communication. Social communication and social interaction. Two-way conversation is a rare occurrence; she can talk animatedly, in detail, about a variety of topics but generally only if the subject is one she has chosen herself. She can answer questions but she dislikes them intensely, particularly if they interrupt whatever else she is focused on at that particular time. Most of her interests are based around a screen, so it's difficult to find a time when she is not focused on something else. Even from a young age she struggled to occupy herself without a screen; she has always professed to hate reading even though she is actually quite good at it. She just never had the staying power, or attention for longer paragraphs or novels. She soaks in information but only when it comes to her in a moving, visual format.

A lot of her communication takes place via screens, whether that's through comments on YouTube videos, or Instagram comments, or text messages to her family. She doesn't always understand social etiquette and can appear blunt although she is merely stating a fact. An example of this recently was when she posted a photo of her blanket on Instagram and someone commented 'that looks cosy on this chilly day!', then our girl's response was 'it's not that cold out'. Totally true, but she had ignored the fact that the first comment was left in an attempt to make polite conversation and that her response seemed somewhat argumentative. 

Sadly, any attempt from me to try to explain this kind of social interaction leads to anger and shutdown from our girl. I remind myself often that she is only twelve (nearly a teenager though, eek!) and hope that some of these communication skills become more apparent to her as she matures. Not because I want to change her, or make her different, but because she craves friendships. Having friends is a two-way relationship and can be complex even for the neurotypical among us. I'm hopeful that she will find friends but am very aware that reciprocal communication will be a necessary skill to learn.

School has been a challenge along the way for us because school is full of demands. Teaching 'to' is the usual state of play rather than individual learning with, which is the approach our girl really needs. She has the ability to learn, in lots of detail, but is not able to sit down and regurgitate facts under stressful test conditions. I live in hope of finding someone who can see her real potential and who will help give her some purpose in life.

Ten years since our girl was diagnosed with autism. Ten years is a long time, and over that time I've spent many hours writing this blog. It has been therapy for me and hopefully sharing our experiences has been helpful for other families along the way. I've recorded videos like the ones below (am definitely not a natural in front of the camera) 

and podcasts (could do more of these, I do love a good chat!),

and I loved doing a radio show with Anna Kennedy. I've spent many hours on social media trying to get the word out, to help others understand autism, PDA and our girl. I truly appreciate every time somebody hits the like or share button because it means there's a chance of one more person understanding. I'm confident that society as a whole is improving day by day in terms of inclusion but we've still some way to go. Please help spread any information you see about autism including articles which talk about individuals; in all areas of society but particularly with autism, it's important that we get to know the individual.

There are a huge number of links in this post, to other blog posts which I've written over the years. Each post describes our girl in some way. What she is like now, and what she has been like through all the different ages and stages. It's impossible to capture all of her attributes and characteristics in just one post, but I hope my words today help others to understand her. I also hope they encourage people to take time to listen and get to really know others.

To find out more about our experiences, please check out our 'About Us' page. If you are looking for more information on Pathological Demand Avoidance, the posts below may help.

What is PDA (Pathological Demand Avoidance)?

Ten things you need to know about Pathological Demand Avoidance

Does my child have Pathological Demand Avoidance?

The difference between PDA and ODD

Strategies for PDA (Pathological Demand Avoidance)

Pathological Demand Avoidance: Strategies for Schools

Challenging Behaviour and PDA

Is Pathological Demand Avoidance real?

Autism with demand avoidance or Pathological Demand Avoidance?

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