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Guest post: 'Holidays used to be survival exercises - here, my son's autism was accepted'

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MumsnetGuestPosts · 19/06/2014 12:33

My son Archie is 15, non-verbal, severely autistic and an adrenaline junkie speed freak. There’s nothing he likes more than surfing big waves tandem, or riding roller coasters - and anything he does needs to be fast.

He likes horse riding, too, but hasn’t always got on that well with the better known disabled riding activities - I think of them as being a clash of cultures. They do great things for a lot of people, but they don’t really do fast, and Archie doesn’t really do anything else.

There are more specialist organisations and camps for children with autism – the best known of which are the Horse Boy camps. These were set up by Rupert Isaacson - who told the story of how his son Rowan, who has autism, underwent a healing process via a relationship with horses in both a book and film of the same name. The camps have been going in the UK for a few years now. We attended an early camp back in 2010 – and found that while horses themselves may not be a magic key for everyone, spending time as a family in a judgement-free space, outside in the open and in an accepting environment can be healing. And, yes, horses might help.

My memories are mainly idyllic – a word not often associated with severe autism. We stayed in a yurt which Archie and his brothers, Joseph and Louis, loved, and although we weren't at an exclusive Horse Boy campsite there were so many of us taking part we didn't really notice anyone staring. That feeling of safety in numbers was a lifeline. I felt no need to apologise for any unusual behaviours. The children could all be who they are. Siblings could socialise with other siblings without having to explain or be embarrassed by anything. Volunteers helped Joseph and Louis to toast marshmallows, and we were able to join one of our neighbours outside their campfire once the children were asleep – a bit of a first for our camping trips. Four years later we still meet that particular family most years to have a surf, swap a year’s worth of news and share some food and wine.

The fresh air and sunshine meant the boys all slept deeply and well. And Archie? I remember him being calm – at that time a near impossible state for him to achieve. I have a photo of him just sitting, chilling out in a chair next to a horse. For an eleven-year-old Archie, that was something pretty extraordinary.

One of the most important things was how flexible the camp was - the rides were arranged around the children and their needs. Volunteers were positioned either side of the ponies so chances of falling were low and people were ready to react to any unexpected behaviour. The children rode bare back or in western saddles and were able to lean on adults either side. They were encouraged to groom the ponies and to stoke them and cuddle them. Archie, to my surprise, bonded with a horse called Lucy. He prodded her (she didn't seem to mind), stroked her and spoke to her (he said ‘neigh’). At that time, he’d paid little attention to animals, so this was a Big Thing for us.

In ‘Horse Boy’, Isaacson writes about the difference between cure and healing. Healing is about learning to live happily and productively with autism. For us as a family, the weekend really was healing - we had a holiday, a proper one, and our first since autism. Previous trips had being more of a survival exercise than a holiday. It wasn't just about the horses - although their movement helped - it was about being outside, having a bit of freedom, and it was about Archie being accepted for who he is. There was no need to contain him, and so everybody’s shoulders dropped - our muscles unknotted and we healed as a family.

We see the same effect when Archie is surfing or walking on Dartmoor. In all these places he has space and a freedom of movement. When we climb to the top of a Tor to have lunch (we do this often) we share the same experience of space, wind and the beauty of the view. It was in one of these moments, when I saw that Archie was getting just as much from the experience as me, that I began to make peace with his autism. When Archie rides a horse, it calms him in exactly the same way it calms me. When he surfs, he experiences the same exhilaration catching a wave as every other surfer. During these activities, his severe autism doesn't matter. Life is ultimately about experiences, and in those moments Archie is living life. In those moments, at least, he is healed.

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hazeyjane · 19/06/2014 14:29

You write so beautifully. Thankyou for that piece.

Finding experiences that all the family can enjoy are so important, we have had breaks where ds is miserable, and unsettled and we all suffer.

Our best holidays are spent camping with friends who we know very well, our dds have friends to run around with, our tent (and the back of the car!) becomes a safe space for ds and dh and I have friends to sit and drink wine with while we watch the stars in the evening.

Ds (who is 4 and non verbal with a genetic condition) starts school in September, they do horse riding at the school every week, I cannot imagine how it is going to go!

Thanks