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.

 

 

Happy Christmas and New Year!

Firstly I’d like to apologise for the silence, this blog post is months later than I anticipated!   However, there is a reason for that. The LEGO adventure may be put on hold for Canadian reasons. My advanced riding trainer mentioned that she wanted to go and was let down by a friend so I suggested that maybe we could do it with her instead.   It will certainly make it a new adventure for Sofia and I having thus far only travelled together, and I think that she is now ready to experience another person on her journey. For my part, it would make the ride more enjoyable sharing the journey with an adult.  Nothing is booked yet so I can’t say that we are committed at this point, but fingers crossed it will work out well.

 

Last time I wrote we were just heading off on a proper holiday, a much needed one, on a cruise.  I had booked it the year before knowing that whatever the outcomes of this year, that we would both be in desperate need of space from each other and personal time to relax.  It was exactly the same boat that I took Sofia on 4 years ago where she first started to realise that the probability of not liking new things was really quite low and she started to open up to accepting new experiences.  This naturally lead to our adventure across Africa.

 

Interestingly Sofia only remembered specific spaces on the boat where she spent the most time previously, but she doesn’t remember herself and felt no sense of being a different person, older, more confident.   For me though it was very different. Sofia was completely self sufficient on this trip and much more able to cope with certain situations like busy noisy spaces, conversations and going with the flow on days we stepped off the boat.  She was also much more able to socially interact with the other children on the boat, and especially liked to hang out with the younger children which I think is wonderful sign that she is feeling comfortable practising her social skills in an age range she can cope with.  She also socialised with her peer group, however, there were issues, and as always learning experiences!

 

All in all, it really was a wonderful trip, a well earnt pat on the back for ourselves for what we have achieved this year.

 

That biggest achievement being Sofia getting a placement at a school that actually meets her needs.   And wow! Over the course of this term, the difference it is making is enormous. The first significant thing to notice was that she she was finally starting to experience social situations.   Before now, they have just been overwhelming, she would be in state of defensive survival and have no space to reflect and learn. Now she actually has that space and the support to notice and learn from those experiences, but I suppose even more importantly the right peer group with which to have these experiences.  And this is another major difference for her. She is now surrounded only by children who are like her, and a big enough group that she actually gets to choose who she is friends with – the confidence change in her as a result of this was dramatic and happened a few weeks ago. She has gone from be painfully desperate to connect with someone, anyone, to feeling confident that she has some social value and can actually participate in making a choice about who she wants to be friends with or not.  Well done Sofia! I am so proud her her. The icing on the cake being her first school play at the end of term. She got the part she wanted, the wicked witch in the Wizard of Oz, and she absolutely nailed it!

 

With Sofia now exploring pastures new, it has left me at a loose end.  The purpose of my life has moved on, and so I have started the journey of rediscovering my identity and a new purpose in life.  Things were going well until I had a friend to stay for a couple of months, and to my shock and horror, I watched what focus I had crumble to dust.  My adopted parents were finally right – I am completely feeble minded! And I don’t say that in a derogatory way to myself though my parents certainly meant it that way.

 

I recognised that it was not normal to loose focus like that, and not an expression of depression.  Indeed, I would say that my general outlook and mood has been good all things considered.  So with this in mind I decided to turn to my trusty friend Google, and the first thing that popped up when searching problems with focus was ADHD, so I took a test on line and I registered as moderate to severe.  It was a big shift in perspective for me even though I have to say I was aware of this on some level. And I know I knew, if not implicitly, because when I looked up strategies, they mapped exactly to the strategies I was employing from the beginning of term to move forward with this big change in my life of Sofia going to bording school.  

 

To be clear, I’ve not used the term ‘feeble’ minded about people with ADHD to sanction derogatory perspectives toward those who struggle, though people who don’t understand (or don’t want to understand) are likely to view those with ADHD in that way, but more in understanding of how fragile mental focus is with ADHD and how much support it needs through strategies and in particular a strategy of protecting focus achieved from any distracting influences.  What is also true however, is that when that focused is achieved with purpose and meaning it is powerful enough to move mountains and can most certainly be an attribute to the success of our adventure across Africa.

 

Whilst there has been this really good silver lining to my collapse in focus, it is has set me back, and I hoped that by this time I would have a wonderfully clear perspective about the future with my personal goals and most importantly what direction I wanted to go in with Adventure with Autism.  Instead, as I write this, I really don’t have a clue and it will take time to negotiate with my brain and reclaim the ground lost in garnering clarity.

 

Will I seek official diagnosis for ADHD?  No. As with Autism (I register on the border line of Aspergers and Autism on tests), the boat sailed long ago, and any supportive benefit I might have received from diagnosis is past.  I am old enough and ugly enough, and have enough experience of myself, to learn how to manage these aspects of myself and not let them define me but rather find ways that they can serve me and the outcomes I seek.  

 

Yes it is harder as an undiagnosed adult, firstly just discovering these aspects of self is difficult because we tell ourselves so many stories to avoid dealing with reality, especially one that we don’t want to know about or might mean we have to take responsibility for self, but once the reality is there, the support provided by early intervention has to be learnt through trial and error in a way no one else can do for you and the impact of that time has real consequences in the way it doesn’t for a child – for me it is time lost overall, and the double effort now required to get back onto the wagon so to speak.   It is so much better to know what you are dealing with though, without a shadow of a doubt.

 

So what does 2019 hold for us?  Well, in the first instance, both Sofia and I have our own lives to get on with and to continue on our own personal learning curves.  Motorbike travel will happen, and as soon as something is definite, I will let you know. What I would really like to achieve though in the next 6 months, is a clear direction with Adventure with Autism.  All options are on the table at the moment, from closing it down completely and allowing both Sofia and I to find completely independent directions in life, to becoming 100% committed to fundraising and pursuing other projects that don’t involve Sofia until she is ready to come back to it, if she wants to.  If you have any thoughts on what you would like to see happen in this regard, please leave a comment below.

 

Now if you are still reading well done!   This has been a long post! Thank you so much for taking the time to find out where we are and what we are doing.   I hope you have a wonderful Christmas season and a fantastic 2019 with much love from both Sofia and myself.