Friday 15 March 2019

Autism and Imagination.. busting the myth.

When our younger daughter was first diagnosed, autism and imagination were not two words that we ever found in the same article or description of autistic characteristics. The internet on the whole painted a picture of autistic people as being very rule-driven, rigid, very honest, no sense of humour, matter-of-fact, quiet and reclusive, almost boring even. Fast forward nine years and I hope that's not the impression generally given of autism now.

Those kinds of words were partly what led us to do some more digging following on from Sasha's diagnosis though, and that's how we stumbled across the characteristics of Pathological Demand Avoidance.
sasha smiling
Our daughter was chatty, sociable, charming, affectionate and witty - on a good day. She had a lot of good days when she was younger, especially once we figured out that we needed to use PDA strategies rather than the more often regurgitated general autism strategies (now and next board, anyone?!). She was described as 'oppositional' more than once, but we came to realise that it was more a case of 'can't help won't' and better understood as avoidance and withdrawal rather than refusal. We were lucky, I feel, that ODD (Oppositional Defiant Disorder) was not suggested.

Something which Sasha enjoyed back then, and still enjoys today, is role play. At school she tried to engage her peers in her exciting worlds but quickly learnt how to shut them out if they weren't following the ideas which she clearly had in her mind. She didn't quite grasp that the other children were not mind readers! These days she is often to be heard whirling around her playroom, speaking different characters or parts of pretend episodes of shows, for example. She never wants to be watched and I don't think we're supposed to admit that we've heard any of what she says or shouts.

This week, Sasha's school held a tutorial day where we were able to go into school with her for a 1-1 meeting with her teacher. We discussed Sasha's progress; we are now at a point where there has been some great steps forward made in school. Attendance may still be patchy, but it's worth it on the days she is there. Academic progress is not the be-all and end-all for Sasha, there's so much more to her development that is being worked on (surreptitiously) every day. We are thrilled that she has now been able to mix with some other girls with similar profiles to her - this brings its own challenges of course. We are hanging on for the no doubt bumpy, but rewarding ride as she learns to hopefully negotiate friendships too. 

In the meeting with the teacher, Sasha was able to show us what she has been working on in class lately, on her iPad. Using an app called Book Creator, she has started to produce two separate books. Within the app, she is able to type her story as well as add images and draw her own illustrations. Last night after reading what she has created so far, I was blown away by the creativity and level of detail in these. Of course I'm a proud mum and these may not *quite* be ready for publication yet, but I loved them so much that I asked Sasha if I could share a couple of pages with my blog readers as a sneak preview. Luckily, she said yes!
Legend of the glacia book cover
Her first novel (37 pages so far, not finished yet) is called Legend of the Glacia and is the story of a 15 year old dragon called Glacia.
legend of the glacia book opening
There are many twists and turns in the plot, and Sasha finds different ways of displaying her own creative streak.
legend of glacia book spread 3
legend of glacia book spread 4
legend of glacia book spread 5
The language Sasha uses is amazing, considering this is a girl who faces challenges with communicating at times. She even gives some of the characters a different way of speaking, a colloquial language almost. The story is imaginative, original, and captivating. Or at least I think so, but of course I'm biased. What do you think?!
Her second book is a slightly different style, more cartoon driven. She's already talked of how she'd like to be an animator when she's older and she's pretty much teaching herself already. She's created several episodes in a Gacha universe which she is publishing on YouTube and is showing no signs of stopping! 

What I loved about this (and had to share with everyone), is the disclaimer at the top right which Sasha has created. I quote, 'this is a series of adventures where a young pink stick figure jumps out of one adventure and falls right into another. Nothing is based around any real life events and is not to be taken that seriously. May not be suitable for children under 4. Separate volumes with separate stories will be the way this is going. All actions that are copying this will be reported immediately. Schedule will be random. All rights reserved.'

This girl knows her stuff. This girl is autistic, imaginative, creative, passionate, witty and determined. This girl definitely can. 

Autism definitely does not equal no imagination. Myth busted.

One final note; I think this also shows how a flexible environment, with people who really care, can help children with PDA to produce great work. My huge thanks to Sasha's amazing teacher.

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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  1. Oh I love this! Great work by Sasha, I hope she’ll keep enjoying writing and creating stories like these. And fantastic that the school is flexible enough to let her creativity flow xx

    1. Thank you! Yes, I hope she creates many more. School are great x


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