Walking On Tiptoe: reflections on diagnosis

Recently I was interviewed for Spectrum, a magazine aimed at parents and professionals supporting people with autism. The reporter asked questions about Dylan’s diagnosis which required me to recall events from 17 years ago. Here is part of my reply to ‘When did you notice the first signs of autism and how was Dylan diagnosed?’

“As well as a proneness to being unsettled, Dylan wasn’t showing any interest at all in language or toys. He didn’t play with his things, but rather sorted them out  and organised them. And even at a very young age he had a fascination for moving lights and sound, for example from films or the television. He was also quite rigid in his food preferences and had  some strange rituals with his foods and behaviours.  I didn’t piece any of these things   together initially – I didn’t know anything about autism really – but I did notice them. Once he was up and about on his feet, I also noticed that he had a strange lop-sided gait due to walking on his tiptoes. I remember pointing it out to the health visitor at one of his check-ups – ‘look how he walks on his tippy toes’ I’d said. Later, this became the crucial bit of information – the last piece of the jigsaw if you like.”

All of the above observations about Dylan’s behaviour at two years old continue to be true of him at 19, with the possible exception of the toe-walking, which I don’t see him do so often anymore.

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Being asked questions about Dylan’s autism diagnosis years after the event felt both strange and familiar. When Dylan was diagnosed I found myself riding the merry-go -round of questions which will be familiar to any parent of a child with a serious illness or disability. In those initial weeks we attended appointment after appointment with multi-agency professionals in children’s services, all of whom asked the same questions, more or less in the same order. I remember how tired I became of repeating my answers over and over. The story became so well-rehearsed, some days I wasn’t even sure it was mine. There is a sense, I think, in which language and narrative can distance us from experience, and the more I had to talk about Dylan’s development, the more detached from my child I felt.

Being asked the questions again, years later, presented me with an unexpected opportunity. I knew that I had once had ready answers, but with the passage of time I wasn’t sure I could remember them, or whether I trusted them anymore. So I had to think again about how Dylan had been diagnosed, and I found that process helpful; the ‘recovery’ of memories from many years before, filtered through my subsequent experience of caring for Dylan, offered a fresh way of organising my understanding of our (i.e. mine and Dylan’s) life histories. In this process, even the rigidity and lack of change which has been part of  Dylan’s autism could be transformed, in that I could view it differently and so respond differently to it. This reminds me, again, that it is easier, and often more effective, to make changes to ourselves than to others.

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One of my all-time favourite movies is Ordinary People, directed by Robert Redford and starring Donald Sutherland and Mary Tyler Moore. Moore and Sutherland play a married couple dealing with the loss of one of their two sons in a boating accident. The film is a marvellous study of grief and the way in which it affects each of us differently. Some of the most moving scenes involve the surviving son, Conrad, as he struggles to come to terms with his feelings of guilt and inadequacy, but it is the mother’s response which I find most compelling. Tyler Moore brilliantly depicts a woman retreating into a world of routine and order, making lists and lining up cutlery in drawers, refusing to engage with unplanned or unpredictable activity or emotion. For this character, the only way to deal with chaos is to order the things she is able to control: knives, spoons, forks.

An autism diagnosis has sometimes been compared to a death and when the reporter asked me how I responded to Dylan’s diagnosis I made reference to this: ” I suppose”, I said, “I went through the stages used to describe bereavement: shock, denial, anger, grief.  I was also plagued with low-level infections for about two years following the diagnosis: a cough I couldn’t shake off, insomnia, and later the recurrence of some tumours I’d had removed years previously. So the diagnosis took a toll on me physically as well as emotionally.”  Years later, I’d say that I’ve learned a few things from the mother in Ordinary People as well.

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I sometimes catch myself feeling frustrated that I’m working on the same things with Dylan as I was when he was a toddler. Here are some of the things I say quite often:  Don’t put that in your mouth Dylan; Dylan, just try it – you might like it; just eat the macaroni cheese Dylan – don’t do that with it; Dylan, can you open your eyes – look at me please; Dylan, keep your arms still please. These requests sound ridiculous when I write them down. How confusing it must be for Dylan to work out what the rules are about what you can or can’t put in your mouth or do with your body. But one of my roles as Dylan’s carer is to try and interpret the world for him so that he can move through it more safely and with less fear and confusion than he might otherwise. As carers we need resilience and patience to continue to respond to the things which never seem to change. And perhaps there is value to be found in rigidity? If I ask myself what the functionality is to Dylan of lining up DVDs or eating spaghetti on a Tuesday – and if I remember the Mary Tyler Moore character in Ordinary People – I think I can understand how such behaviours and routines help create order in what must seem a chaotic and unpredictable world. Perhaps the challenge for autistic people, and those who care for them, is to hold the competing forces of change and rigidity simultaneously, and creatively, in their lives – but then perhaps that’s a challenge for all of us?

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While Dylan’s autism hasn’t changed significantly in the last 17 years, my response to it has. No doubt in the process of recovering memory I’ve forgotten some things that seemed important at the time but which have faded or which I’ve suppressed because they were too painful. Forgetting, I often think, is as important a part of survival as memory. Some things, though, I am unable to forget. Although I noted earlier that toe-walking is something Dylan does less of now, it was this behaviour that was of particular significance to me at the time of diagnosis. As a poet I sometimes respond swiftly to experience and I captured events pretty much as they happened at the time in the poem Walking on Tiptoe.  If I were to write a poem about Dylan’s autism diagnosis today it would no doubt be a different poem to the one below. While both the style and emotion of the poem seem very raw to me now, perhaps without the rawness there would be no possibility of transformation.

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Walking on Tiptoe

That afternoon, a pale amber light lit the tops of the hills
as we drove home from work and I felt myself unfurl to greet it,
grow brave after months of darkness.
I started to talk about him that evening while you chose a video
and the new baby kicked on the rug.
There was just something that didn’t feel right.
I could live longer without words, if it was only that,
but there were the cars which he clutched
and the things which he moved, backwards and forwards,
the route home from work which couldn’t be changed.
I asked you to get down the medical dictionary
and said:  Look up Autism, read me that.

In a strong steady voice you read to me from the living room
while I moved quietly around the kitchen, making his tea.
I listened vaguely to the symptoms and signs,
thinking yes and yes again, but not really engaging –
knowing the same could be said of all two year olds –
don’t want to look, don’t want to be picked up, don’t want to play or talk.
So I wasn’t desperately listening to you – was busy with a saucepan –
when you read, without hesitation (as if the words had no meaning):
There may be other behavioural abnormalities such as walking on tiptoe…

No, No, No. The pan clattered against the sink.  You continued reading.
Backwards and forwards, I paced the kitchen, flapping my arms.
No need for more words.  Stop, Stop I yelled at you and you ran to me,
then, spinning on the spot, not knowing where to turn,
how to get back, back to where I was before.
I banged my wrists hard against the glass in the patio doors,
wailing No, No, No as the light went out of the sky.
Inside, the genie was out of the lamp.
But oh to be free I heard him say as my son sat,
trapped in the glow from the screen, fixed by the colours.
I turned myself to the hills, switched on the outside light,
stared at the garden.

Later, when you understood, you smashed your fist against the wall.
The switch cracked from the bottom corner to the top right.
The next day you unscrewed the fissured plate; fitted new parts, fixed it up.

*

Reference

Barrett, Elizabeth (1998) ‘Walking on Tiptoe’ in Walking on Tiptoe, Staple First Editions