Dylan, like many autistic people, likes his routines; he seems to find the pattern of attendance at his day centre reassuring and to enjoy the rhythm of his regular activities. It’s not just the autistic person who can feel comfortable with routine though – parents and carers can also fall back on tried and tested activities rather than risk something new.
My trips out with Dylan habitually involve a back-up plan in case Dylan becomes distressed or a situation becomes unsafe. I always think through contingencies and draft Plan B as well as Plan A in my head (and occasionally Plans C and D). In some ways these are not dissimilar from the ‘risk assessments’ we undertake when supervising any activity with young people. However, they differ in that with autism there is usually an ‘abort activity’ filter and a scenario which would trigger a request for help. As a single parent I am particularly conscious of the extra challenge this presents. I don’t have family I could call on for help with Dylan and I would not expect friends to be on hand if I found myself in a situation where I needed support. The implications of this are that I either trust that in such a situation there will always be an intuitive and generous member of the public around or I don’t put myself and Dylan in a situation where we need help. For some parents of autistic children, then, routines appear attractive in that they can reduce risk.
The Calculated Risk
This isn’t good enough though is it? Apart from the fact that risk can never be entirely eliminated (only last week I had an incident with Dylan in a familiar place for reasons I still cannot fathom) I know that it is not healthy to live life so fearfully. I have made passing reference to the impact of fear on my caring for Dylan elsewhere (see, for example, this post). While I realise that such feelings are motivated by wanting to keep Dylan safe and well, I am aware that this is not something I can allow to get the better of me. Curiosity and novelty are as much a part of learning for autistic people as for non-autistic people; if I want Dylan to reach his potential then I need to develop the confidence to support him into new situations so that he can discover things about himself and the world.
Happily, something comes along every so often which offers just the right degree of novelty. In summer 2011, for example, I took Dylan on a steam train trip from our home city to the coast. Although to some people this may not seem like much of a risk, it required me to think through contingencies. How would Dylan cope with a 12 hour trip away from home without a car (many families living with autism depend heavily on private vehicles to manage outings)? Would the noise of the engine bother him? What if Dylan didn’t like our seats or the carriage was over-crowded? How could I help him to understand that we were only getting off the train at our destination station for a short while? What if Dylan wouldn’t get back on? And (crucially!) how would I go to the toilet on the train given that Dylan can’t be left unsupervised?
On the day of the trip we happened to be seated at a table with a couple who, although they didn’t use the term autism in connection with their grown-up son, had an understanding of Dylan which I usually only observe in other parents of autistic children. The trip was a success and passed pleasantly both directions with our carriage companions intuitively understanding Dylan and even supporting him while I nipped to the loo and to buy refreshments. At some point our companions enquired if Dylan was interested in zoos. Their son, apparently, had developed a passion for them which had stayed with him into adulthood; there was nothing he liked better than visiting a zoo, an interest which had over the years taken him all over the world.
It is my experience that if you take one small risk (a day trip on a steam train for example) it not only opens up whole new vistas but can conjure new journeys. Since that first trip Dylan and I have taken regular steam train journeys. It is now one of Dylan’s favourite leisure activities and something which he is always cajoling from me (by leaving flyers for steam trains on my desk). But this post isn’t about the new vistas which steam trains open up; it is about the new journey which the small and calculated risk of that first train trip triggered.
Lions and Tigers
After the trip I thought about the couple with the zoological son and decided to try an outing to a zoo (Dylan had been on family visits as a toddler but not since). I did quite a lot of preparation in advance of our first visit but with the wrong animal. My prediction had been that Dylan would like monkeys so on the run up to our first trip (to Chester Zoo) I spent a lot of time talking about them with him, waving my arms around and hooting, and borrowing monkey-themed resources from the library. As it happened, Dylan wasn’t overly bothered about the monkeys. The lions however – well that was quite another matter. Our entire day at Chester Zoo – and every zoo we have visited since – involved us circling the big cat enclosures.
The marvellous thing about zoos is that once you’re inside they are traffic free and safe. I’ve discovered that I can reduce the level of supervision and direction I would normally give to Dylan so I tend to ignore the map and leave the route to Dylan to negotiate; always, and almost uncannily, he leads me to the lions. Zoos have became a passionate interest for Dylan and we have spent the last few years systematically visiting them in the way the couple on the train probably did with their son when he was younger. This has been fantastic for Dylan; it has supported his language development and his interests. As well as leaving flyers of trains on my desk for me to find, he now periodically leaves me the hint of a lion picture. Holiday destinations in the last few years have been carefully selected to be within reach of a) a tandem cycle hire b) a steam railway and c) a zoo.
I realise this is beginning to sound more like routine than risk – and it’s true that with Dylan things that begin risky quickly become routines if they prove popular. But the way in which the lions posed an additional risk was that in due course we had visited all the zoos which I considered to be possible. This included Edinburgh Zoo which, although in a capital city in another country, had somehow seemed manageable. What we were left with, if we were going to continue, were far more challenging locations. Our tour of zoos, which had started from a chance encounter during the comfortable risk of a steam train, had led us to London.
The Capital Risk
Did I fancy taking Dylan and Ella to London Zoo? Julie asked. I had met Julie at a poetry festival the previous year. She had an autistic daughter only slightly older than Dylan and so, through our shared interest in poetry and autism, we had kept in touch. Dylan and Ella had met a couple of times and while they didn’t pay much attention to each other there had been encouraging displays of tolerance and shared interests. Ella had been to London several times previously but hadn’t been to a zoo before, so that would represent something new for her. Dylan, by contrast, had been to lots of zoos and I knew he would be very comfortable once he was inside London Zoo – for him it was negotiating travel in the city which would be the challenge.
I lived in and around the capital in the 80s and 90s and am quite comfortable in London. While Dylan was still only a baby, however, I moved north; although we visited friends in London for a few years afterwards, after the autism diagnosis visits with Dylan stopped. There seemed to me to be no good reason to take Dylan there; he doesn’t like crowds, hates noise, isn’t interested in London’s cultural attractions and has no road or traffic sense. In fact, Dylan likes the routine of home and to be out walking in unpopulated countryside. So while Dylan was growing up I made quick forays down to London alone while he was in respite.
My initial reaction to Julie’s question was that it was impossible; there was no way I had the confidence to manage Dylan in London by myself. However, Julie was gently encouraging, reassuring me that she and her partner would be there if I needed support with Dylan and that their experience with Ella was that it was fine, providing you calculated the risks. What this involved, they explained, was doing things which were familiar such as eating at favourite restaurants and using the buses. Getting around the city was one of my key concerns; I had visions of Dylan going into meltdown in the deepest underground station and refusing to get on a train or take an escalator back up to street level. Although I knew walking routes across the city, the hubbub of the crowds and traffic didn’t make this a good option for Dylan, so not using public transport, I predicted, could create a problem.
Sometimes I can talk myself into taking a medium-sized risk by flirting with an even bigger hazard. Noticing an advert for an Autism Friendly production of The Lion King in the West End I was seduced by the idea of turning the proposed trip into a lion-themed weekend. Shall we take Ella and Dylan to see The Lion King while we’re there? I asked Julie.
So at Easter last year we travelled to London from our respective cities for the weekend. We stayed in different hotels in different parts of the city so had the independence and autonomy that families need, especially when autism has to be factored in. However, knowing that Richard and Julie were just a telephone call away was hugely reassuring. I had no doubt that Dylan would enjoy the zoo and he did, indeed, appear to (though I suspect it wouldn’t make it into his top three). What I was certain Dylan wouldn’t tolerate, however, was the theatre.
Dylan had not been to the theatre before and I was sure that he wouldn’t accept the changes which a live production would involve to a story he already knew; he has been watching the Lion King DVD every week for years and I was quite prepared for Dylan to be furious at any deviation from the film version. I was, however, prepared to risk trying Dylan at the theatre given that it was an Autism Friendly production and I would have the support of Richard and Julie. These two factors – an inclusive production and the encouragement of friends – were absolutely key to me taking the risk
It was more than worth it. Dylan, against all my predictions, stayed for the full show. It was a wonderful production (it had never occurred to me that I might enjoy it) and Dylan certainly seemed interested; it might not have been the same as his DVD, but he recognised characters and songs and paid attention to unfamiliar aspects of the show. Because The Lyceum’s production of The Lion King was the first inclusive theatre production we had attended I didn’t realise that it was the Gold Standard. However, having recently taken Dylan to another theatre production, I would describe The Lion King as exemplary Autism Friendly provision. I’m glad that this was the case as it meant that Dylan’s first experience was a positive one, something which has been very enabling (I will reflect on the growth in inclusive cultural events in a later post).
The success of the theatre visit astonished me and provided the elation which I sometimes imagine is reserved for parents of children for whom every achievement is a triumph. Equally astonishing, though, was Dylan’s reaction to London itself. It turned out that he loved the crowds and traffic. He walked the streets of London like a native, leading me with delight to shops and cafés. Dylan quickly learned the route back to our hotel and settled himself as if at home. Most striking of all was his quick interest in riding the underground. All my pre-visit fears were unfounded; Dylan adored the Tube trains so much that every time we walked by the mouth of an underground station he tried to pull me in.
Once I had got over my surprise I understood why this might be. Dylan has always had a fascination for tunnels, something which I think stems from a scene in Thomas the Tank Engine where Henry won’t come out of the tunnel in case he gets his paint wet. On regular trains I had noticed that Dylan makes a particular hand signal whenever the train passes through a tunnel; turning them palm up, Dylan cups his hands gently until we emerge into the light. If I’d have thought a little more about Dylan’s love of tunnels, I might have realised that the capital would be a huge hit with him. Imagine it: one great network of tunnels under the city with entry points wherever you walk and escalators waiting to take you up and down. It must have seemed like a giant fun fair.
Wizards and Lions
In the Wizard of Oz it is Lion who sets off down the Yellow Brick Road in search of the Emerald City to ask the wizard for some courage. I think that out of that quartet of friends – Dorothy, Tin Man, Scarecrow and Lion – I am certainly Lion. When I watch the Judy Garland version of the film now I am struck by the fact that the actors who play the farm hands on Aunt Em’s Kansas farm are the same actors who play the characters in search of what they lack. I don’t think I noticed this as a child. Now I enjoy the way that it reinforces the idea that we actually already have the things we think we are most in need of; that our intelligence, love and courage are not qualities that exist somewhere outside of us, but are right here in our own backyard.
Acting with courage to raise a child or support an adult with autism is something that we can all do if we believe that we can; lion had courage all along, he was just sometimes a little afraid of himself. What he did need in order to realise that the courage was within him, though, was friends to help him along the way. Parents and carers of children with autism sometimes need people to support them as they learn to take new risks. I have done a number of things with Dylan in the last year (including driving alone with him to France which you can read about here) which I doubt I would have contemplated without the weekend in London. I’d therefore like to dedicate this post to the Corbetts for their encouragement and friendship that weekend and since.
You can catch up with Ella’s travels here: www.facebook.com/pages/Ellas-Travels/383690745077645