Photography, Autism and Sofia

I do understand that some may be wondering why on earth I present taking photos as an ‘issue’ for Sofia.  What could possibly be hard about pointing, clicking and recording the memory of an experience.

For me it exemplifies how autism is different thinking.  Whether you as an individual ‘believe’ it or not that it is possible for the action of taking a photo is difficult when physical ability it there, that doesn’t change the reality of the person with autism who, for reasons they can’t fathom any more than you, can’t take a photograph.

That is not to say that there may not be reasons.  The most obvious is Pathological Demand Avoidance (PDA) which effectively means that any demand or expectation made will be refused, avoided, reconstructed into something else, or whatever the coping strategy is for the individual for the demand.   I think this is over simplifying it sometimes though.  I think there are fundamental fears in Sofia’s case at least.  Fears of not being able to do something perfectly (which is the principle reason for her not trying anything new), fears of not knowing everything, fears of being seen less than a god with all the answers and therefore making her vulnerable in some way, and there may be even deeper fears as well.

What I do know is that it’s an activity Sofia would enjoy, and with a little encouragement of giving her a task of taking pictures she was soon picking up her camera without facilitation.   We had a back step for three days when she saw my post about her having fun with it but she was soon at it again with a grumble about ‘why do you have to always be right?’.   And now something incredible is happening.  I don’t know if it is the photography for sure but I know it’s playing a big part.

Sofia has remarked with astonishment that she is remembering things in her past.  It seems to be mostly events in her school experiences at the moment, but that she is remembering them at all is amazing.   Sofia’s memory of personal experiences has been very ‘thin’ to say the least and certainly unreliable, whilst her memory for facts and figures has been astonishingly good.  The memories she has had have been unprocessed, just stuck there like a video recording with no particular meaning, where as now they seem to elicit a degree of self acceptance, learning and growing.

Is our mindfulness work also playing into this?  I have no doubt it is, but without the process of observation through a camera lense teaching her brain a basic function of seeing the world in a different way, I doubt these memories would have started to surface at all to be processed and viewed through the lense of time.

I have been criticised for ‘over thinking’ all of this but I would rather over think and be aware of her struggles then come up with solutions that deliver results, than to not think deeply at all assuming there can be no change and let her miss out on even a drop of life that might be available to her.   But this is what autism parenting is – it is over thinking everything because we have to get our beautiful, different children to the water where they don’t want to be knowing they will refuse to drink even though they are thirsty, and then, if we are successful at getting them to the water, coming up with ingenious ways to get them to drink without them loosing face that they were weak enough to be thirsty (if that is the reason at all, it could be something entirely different in which case only over thinking will provide an answer, and we need that answer to help them to drink).

 

We travel on motorbike and share our story to help raise awareness for autism and the benefits of adventure travel as a platform for learning life skills for autism.   

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Sofia was diagnosed with Autism when she was 4 years old.   When she was 10 years old she under took her first journey in a sidecar from the UK to South Africa.  Since then she has started to ride pillion on a motorbike and travelled Europe and this year goes to Eastern Canada.  She is now 13 years old and the skills she is learning on this journey are related to maintaining positive mental health.  This skill is the hardest of the life skills to learn, harder still in a modern world where materialism and science define life and not spirituality and wisdom because it can’t be bought or proven, it relies completely on faith.

Canada Preparations

Canada preping on #Dartmoor ride. Ride – walk 2 hrs – then ride a distance.
Lesson learnt- not a good plan walking 2 hrs with biker trousers and boots! Not helped by me trying a kit variation involving keeping lining in making the trousers heavy to walk in. It was a good ride though, Dartmoor is stunning.

A big part of our #Canada trip is to slow down and ‘do’ more. Sofia really struggles with the concept of ‘doing’ and it triggers her pathological demand avoidance (#PDA) which is part of her #autism profile – this effectively means she refuses to ‘do’ that which she percieves is expected of her which is felt intensely and must be fought against and/or reinterpreted to her own liking. It is an anxiety state. From the outside this is often percieved by others as laziness, but actually it is anxiety driven.

Yet for her living in the future (aka in a state of anxiety) is more ‘relaxing’ than living in the present moment she tells me. A miss conception I hope to help her resolve in #Canada & hope in turn it will help her manage her PDA and enable her to do more. Because the frustrating thing for her is that it is not that she doesn’t want to go for a walk for example or draw the picture somone has asked her to, but she doesn’t understand why she can’t let herself ‘do’ these things.

How do I get her to do as much as she does with PDA? Constant negotiation and a huge amount of planning to ensure negotiations are successful. I don’t sweat the small stuff either, thats where the really big resistance is – in big stuff like travelling there is a fate à complis and serves as a distraction so small stuff can enter through the back door of her mind.

 

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