Travelling With Autism: How is Sofia Coping?

A question I am asked most often since starting the journey is – How is Sofia coping?  I have tried several times to write a post, however, I always ask Sofia to read it and agree to it being published and I hope this time we get a thumbs up.

My approach with Sofia is to always keep her informed with what is going to happen, and be repetitive about those things that may be particularly difficult for her.  The first instance was the drive across Europe.  I knew that the time of year and expense would mean we had to push through with long and sometimes difficult driving conditions.  Whilst the weather was mostly good for us, there were a couple of days where it was particularly challenging and Sofia was able to recall my words of warning and explaining the necessity to push through and not prolong the pain.   After 10 months of planning, I think her desire to get to Africa supported her immensely, and I am so proud of how she handled herself.

Grumpy Weather for a Grumpy Day – but Athens is still one of her Favourites

Cairo was very difficult for Sofia to adjust to, in fact I can’t say that she every really did.  Museums and sites, normally crisis centres, suddenly became a refuge and will probably be on the only time we will enjoy sites and museums at leisure.  As part of her coping strategy for this journey as a whole though, Sofia had devised a new journey to take after this one in a couple of years, involving horses and Asia.   So now she was open to try riding, something she had been previously nervous about, and it as a pleasure to see her wanting to learn a new skill.

Overwhelmed by the time we got to Alexandria, Sofia became withdrawn and ill.  It wasn’t until we were in Hurgada, that she finally had time to recover her energy and be ready to continue south.  Her support system on the bike has been music, and one of the things I was hoping to see develop and help her on long journeys, was the ability to look at the world outside of the environ of the side car.  Through Europe I was drawing her attention to things like landscape or differences in house building styles, but it was our journey to Aswan where a Greater Spotted Eagle flew in front of us for about 20 seconds, that she slowly started to take real notice of what was happening around her.

Horse riding in Giza

With this break through, I started to introduce her to the idea of navigation.  Sofia had been very resistant to the idea, but once I knew she was starting to look ‘outside’ that she would be able to start feeling a degree of success.  It was in Sudan, leaving Gondola with only Google maps as a guide, that she had her first experience of navigation.  Really at this point she was just holding the phone for me, but in that way she became directly involved.  So when we arrived in Khartoum, I asked her to start giving me information about when the next turn was, and to watch the little dot, which was us, follow the blue line of our route.  She did really well, and since that time, with lots of trail and error, she is beginning to learn the process of following the route, recognising changes in direction, and is now slowly starting to process it in a way she can communicate which is turning into recognising the communication that I need to take the right action.    At the start of the trip, it was too overwhelming for her to even follow our progress, now she is becoming and active part in making the journey happen.

Photography is a problem for Sofia, whether it is photos being taken of her, or taking photos herself.  This whole area is something she is resisting along with a desire to not have photos published.  As you have seen most photos will be with her helmet on, as I try to compromise, and everything written about her specifically is only published with her approval.  I think it is important that she feels a sense of control over how much the world knows about her and sees her.

Helmets provide good cover from the Camera!

Since arriving in Ethiopia, children in particular have been very curious about us and especially Sofia.  Sofia has found this very difficult to cope with this as she doesn’t feel any sense of control over the interaction.  We have had a number of stressful moments, and at such times, I ask her to stay close to me and I become her barrier between them and her.  Over dinner a couple of days ago, she began to reflect on she felt like such a stranger in Africa, and I suspect this may be largely because instead of her being able to seek company, instead she feels she has to chase it away.

On the whole though, Sofia is enjoying the journey immensely.  She will say she misses home, and that she wants to go home, which I think is understandable.  However, these times tend to occur when we stay in a place for longer than a few days. Once we are back on the road again her wanderlust takes over and she seems to settle down again.  Yes we have had our relationship ups and downs, and autistic obsessions and misunderstandings are our constant companions.  But for both of us, our over all understanding of the role it is playing in her life is becoming clearer.  And whilst that may not mean a huge about to her now, I can see in the future that this understanding will faciliate her to accept challenges as an adult.

I am enormously proud of her and the accepting of new personal challenges she is presented with, whether it is learning navigation, or taking a risk and going to see a volcano before knowing what to expect – she has exceeded all my expectations.

Post Script:  Yay! this post has been approved!