I’m a parent of an autistic child and I would lay down my life if I thought it would improve her quality of life or chances of independence. Thankfully that hasn’t been necessary!
I did feel it was necessary to do something extraordinary to help her though. The impossible situation of being in a position where I could see what the challenges were but in a situation where there was no chance of being able to even attempt to resolve them. In short, Sofia’s world was too safe and predictable and I could see it was future of severe physical, emotional and mental disability. And once I saw that, I knew I had to do something.
The following points were key in what I was trying to address by travelling:
LIFE EXPERIENCE – life experience is the most valuable aspect of life itself. Experiences both good and bad cause us to grow and develop our sense of the world. Where life experience is limited or emotions remain unresolved (not processed appropriately) then it often leads to mental health issues. Autism is particularly vulnerable, so sheltering Sofia from life experiences because she was too afraid to go outside or to the supermarket didn’t seem like a good idea. Most people deal with the small things first and struggle with the bigger, but in this case, it was clear that starting with the big things will probably help with the small. Being on the road moving physically (whether in a car or on two feet) is a physical process of emotional processing, so even though it is unlikely she would learn to process emotions consciously any time soon, the physical movement would facilitate that process and help her mind gain some degree of clarity to work on other things.
‘SEEING’ THE WORLD – Sofia didn’t start to look out of the window of the car until she was around five years old and when she did look, it was rare that she would see anything like a horse or sheep. I would often point things out, but the dyspraxia got in the way when I would point in one direction she would look in the other! So she didn’t see much even though she had perfect vision. I imagine her vision was a chaotic mess of things and colours which her brain didn’t interpret. I wanted to incentivize her brain to ‘see’ and make sense of what it was ‘seeing’. In terms of making sense of what was seen, at nine years old Sofia understood what a table was and what a chair was but she had no concept that there was a relationship between the two. They were separate entities with no meaning to each other.
NO CHOICE – The older a child gets and knows it’s world and what it likes and doesn’t like the harder it becomes to teach and introduce new things. This is particularly hard when all the choices the child makes are very restrictive to its life experienced. By the time Sofia was 9 years old she went to school, come home and would trampoline, draw, computer, trampoline, tv, draw, trampoline and so on. This routine was expanded for non school days. Going out for a day would turn into world war three to get her in the car and once out her tolerance for being in any particular place was only about thirty minutes before her behaviour would start escalating towards a meltdown. The flip side to this was that in part this was due to physical tiredness. With hypermobility, dyspraxia, executive function disorder and pathological demand avoidance – she really didn’t stand a chance. There was only one solution. Put her in a situation where she had no choice but to get on with it whilst at the same not putting the physical or mental demands on her by providing a place to retreat to when she couldn’t cope.
SKILLS – It is impossible not to learn new skills if you are having experiences of life, especially for a child, but most importantly this is tied to having no choice. If Sofia had a choice she would not learn to put up a tent. If she had no choice she would learn through necessity of needing somewhere to sleep. But more than this, she becomes aware of what is available to her in the world to use for her own purposes and needs. This then builds confidence in herself and in the world around her so that fear no longer dominates decisions.
SAFETY – Safety awareness in autism is a huge issue and it is exacerbated by the overly safe environment that we live in. And those considerations that you want to teach your child anyway, become even more urgent in autism where children are very vulnerable to manipulation on the one hand, or just simply not understanding the danger they are putting themselves in. At nine years old Sofia had to hold my hand when walking,and crossing the road. She had a degree of stranger danger, so if she went running off in the supermarket and someone spoke to her she would come running back quickly, or if offered a sweet she would ask me first. But she was following rules rather than being aware of an concepts involved. Further to this, Sofia was still mouthing, especially plants, feathers and sticks and her concept of safety around what could be put in her mouth and what not was not something her brain was incentivized to accept. Travelling was an ideal way to put her in a situation that where she could start to understand safety as a concept and practise it but safe enough for me to manage and demonstrate that risk was something to be managed but not a reason to deny life experiences.
So these were the main points around our first adventure through Africa and to a large extent they still apply. The travelling has had a big impact on her anxiety levels and confidence as a result so we will continue for as long as we can and in doing so we hope to attract more and more people to our story to help understanding of autism as well as to inspire new and different adventures in others either in the autism community, mental health community or the wider world. Life is for living and we all have the right to live it.
My back ground that allowed me to think about autism in this way was not only having been born in Africa and emigrating with my parents to the UK when I was eleven years old and being generally well-travelled as a child and adult, but I am also qualified as an NLP practitioner, EFT Matrix Reimprinting practitioner, trained as a Life Coach and in Hypnotherapy, and generally a life dedicated to understanding the human condition being somewhat on the spectrum myself and needing to get to grips with it. To add to this was being a single parent with little family support and the feeling of needing to put in double to get what two parents can normally achieve between them. Whilst the points above to still apply regardless, it was definitely a big part of my motivation to actually do something extraordinary rather than think about it.