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.   

Please donate to help us :  Virgin Money Giving  or PayPal

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.

Mindfulness Part 3: How do I do fun?

Following on from the emotional blindness discussed in Mindfulness Part 2, is the assumption that quickly becomes a belief that life is something that happens to you (at you).   In autism the concept that one has an intrinsic connection to everything that is experienced is almost impossible to comprehend, or literally impossible depending on which end of the scale of severity the individual sits.

For me this is an element where ADHD comes in as it’s this state of life being something that happens at someone from which the impulsive behaviour stems.   There is no predicibility, there is no cause and effect there is only the ‘now’ to which there are no boundaries because it is not possible for there to be too much or too little as follow on concepts to the understanding that all things are connected.  (Hence the parenting styles are dramatically different for spectrum kids – they simply do not understand cause and effect)

(It is also interesting to note that this is a state of a person who gets stuck on a traumatic event, is very depressed, or finds dealing with change difficult in the sense that ‘life has happened at me over which I have no control’ ergo I am powerless)

So if life is something that happens at you, how do you have fun?  being powerless and having fun are diametrically opposite.

I have always worked with Sofia on positive thinking, however, it’s not enough on its own.  It doesn’t bring fun.   That is not to say that she doesn’t experience fun in her life, it just means that she has no idea HOW it happens because she has no concept that she is responsible for it’s happening.  She needs hand holding towards the realisation that she defines fun and she does that through creative exploits she enjoys and the engagement with task, that it doesn’t need to have any greater meaning than that, and it comes effortlessly (as opposed to the state of distraction which is not the definition of ‘fun’ but a form of escaping because of percieved effort to deal with reality)

Doing photography has become her learning ground for this.  It is a creative exploit which she enjoys when she engages with it, but she struggles with doing it because she is demand avoidant as she percieves some other greater expectation.   Yet it really doesn’t have to be more than ‘doing’ for enjoyment of being creative and the results of which are satisfying.   In what she has done so far (I give her the task of 10 photos every so often)  it is clear that the moments where she is most engaged to task, she is producing the best photos – photos that she likes and gains satsifaction from.  It is in those moments she has created fun for herself, felt that fun, produced something satisfying with it and at the same time provided herself with a doorway to memories.

Creative = fun = product = satisfaction = memory = creative = fun = product etc.

Sofia is at least letting me lead her towards understanding fun.  I set the task of taking 10 photos, she does it (sometimes with a grumble, rarely immediately but she does it), enjoys it, and then she enjoys sitting with me and going through them (oops! a sharing activity has slipped in there creating human connection = more fun).  And most importantly, none of this fun is some crazy happy wild emotion, it is just simply feeling good, relaxed and happy.

Why is this important?  because this it the point of living.  This is where the present moment of ‘now’ exists.  This is where creation happens for more positive experiences to enter her life.  This is how she will get what she wants as God or the Universe falls over itself to give it to her and all she had to do was relax and enjoy the creativity of what she was doing.

 

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.   

Please donate to help us :  Virgin Money Giving  or PayPal

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 spirituality and wisdom not because it can’t be bought or proven, it relies completely on faith.

 

 

A Special Interest for Travelling

Sadly Sofia heads back to school today – it has been a great couple of weeks riding almost everyday.

I’ve tried to do as much prepping with her as possible. One aspect of this has been discussing the need for her to have her own special interest to help stay focused on her surroundings and reduce any PDA (pathological demand avoidance) responses.

In Africa it was birds, animals and different flavours of Fanta. On this trip it is birds and photography (as an extention of her art) at the moment … the latter may be more of an issue as she doesn’t understand what it means to take a photo. Obviously she can perform the action and understand it is a creative modality, but it has no meaning for her at this point in the sense of not being able to internalise photography as a concept of creative expression – if that makes sense. So I’m hoping one of the staff in her house at school, who is a keen photographer, will be able to help her with this.

Conceptual understanding of the world in autism is a real struggle, especially where there is no intellectual disability because ideas can be understood/verbalised in an abstract way on one level, but conceptual understanding needs ideas internalised in order to take action on that information. With out that internalisation the connections between things have no meaning or value.

The main thing is that she attempts to take advantage of this trip for her own means independent of me and what I’m doing and pushes that agenda.

She needs a lot of encouragement to do this in the presence of others (me in this case) as she is constantly hyper aware of audience over and above her own needs. So this will be an on going conversation until we find the right note or even activity that will float her boat enough to over come this. This will work in line with ‘living in the moment’.

#autism #autistic #autismawareness #Canada #camping #bikersofinstagram #bikerkid #bikergirl #bikers #motorcycle #bmwgirl #bmwadv #bmwgs #bmw1200gs #bikelife #bmwmotorrad #advlife #adventure #travel #advbike #touring