Walking On Tiptoe: reflections on diagnosis

Recently I was booksinterviewed 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.

*

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.

*

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.

*

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?

*

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.

*

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

18 thoughts on “Walking On Tiptoe: reflections on diagnosis

  1. Stunning poem. Felt like I was in the kitchen witnessing your experience (and have an experience of my own to contrast it to). Will look forward to your next post.

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    • Hi Hayley – thanks so much for that comment. I’m glad you like the poem. Sounds like you might have an autistic child yourself? Or something happen in a kitchen? Why is it that so many life-changing events happen in kitchens??!! I’m about to make another post (I’m new to this so fingers crossed) which was going to be about France but has turned out to be about toilets!

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      • I know what you mean about kitchens! I’m sure they see more of life than other rooms. Yes, I do have a son with autism. He’s just a year younger than your son, His name is Ian. Reading your blog on diagnosis took me back 16 years to that traumatic time and all the pertinent memories that remain. In particular I remember Ian charging around in a very orange hooded coat and not responding to my attempts to interact with him. I also remember the best and the worst appointments with various professionals; the ‘phonecall’ to my husband (from the kitchen) and having trouble sleeping. Although I don’t revisit these memories very often now it has been helpful to spend a little time doing so. I can see how far we’ve come and know that on the whole we’re doing ok. Thanks again for sharing your experiences 🙂

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      • Hi Hayley – I love how visual and alive your memories are even though, as you say, it is a long time ago now and we move on (with amazement, for me sometimes, at how far and well). That orange-hooded coat! And that phone call! Your memories are very compelling and concrete. Maybe this is what the trauma of the time does for us – makes it stay with us almost like film. I remember Dylan wearing an Early Leaning Centre policeman’s helmet which used to drive me crazy. I can’t remember who bought it for him. I got so used to him wearing it that one day I turned and looked at him in horror in a supermarket when I realised he was wearing it outside the house – I’d just sort of normalised this helmet. Well, he still likes to wear hats and hoods of course (something about autism and hoods) – but at least today it’s a trendy Breton fisherman’s cap (which elicited admiring and covetous glances among the male staff in his new day centre yesterday!). Good to hear a bit about your experience with Ian – like you, I don’t often think about those days, and when I do it is almost always with thanks that we have got to where we are now. Writing this blog is triggering deeper memories in a healing way though, I think…

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  2. Aww, your poem is quite touching and beautifully written.

    I don’t have children of my own, aside from furry four-legged kids, but one of my dear friends has a son with Fragile X Syndrome, and many of the ladies I have met on the blogs have autistic children. I think it’s wonderful that you are writing about it and your experiences.

    My best,
    Christy

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  3. Thanks Christy – much appreciated. I love that this is a vehicle for talking beyond the usual boundaries of things, so that people with and without autism can be here. Same with yours I guess in a way – I love your blog and what you’re doing with it. I shared it on my fb page last week in fact as one of my ‘top faves’. I love the way you are so straight about it, write so beautifully and have cool music taste. The piece about your mother was wonderful. Respect to you. Liz (also runningonsober)

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    • Namaste.

      Thank you, Liz, for your kind remarks and for sharing my work with your friends.

      Grace intervenes in the most interesting of ways, and I’m grateful it connected us.

      This post has lingered with me: the compulsive desire for order and control after trauma, the grieving process for the way things were as we adjust to the way things are, and the simple elegance of your poetry.

      Nice to be running along with you,
      Christy

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      • Hi Christy – ‘Grace’ is such a wonderful concept I always think (rare and mysterious) and you address is beautifully in your piece. It was my Grandmother’s name. Interesting to hear that the compulsion stayed with you as an image. I often think that it is a human response to trauma – the attempt to ‘batten the hatches’ and take control. I have long intended writing a poem about a very harrowing report I read here in the media about a young couple who were found guilty of murdering their young baby. The couple had come from a care background and from disordered and chaotic home lives. They had met while in care and tried to build a good life together. One of the details of the case that stuck with me is that when they went through the house after the tragedy the authorities found it was perfectly ordered, with the cutlery arranged in perfect lines, and everything kept like a museum. The psychiatrist’s reports suggested that the couple had tried to keep order against the chaos of their early lives, and of course a newborn crying baby didn’t fit well with this environment. Hence the tragedy. So perhaps there’s something here about the way order can help us cope with grief, but that we must always remember that there are some things we can’t control. Birth and Death are good examples! Oh – I didn’t know I was going to write this or have that memory – thanks for triggering it! Must get to work! Lizx

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  4. I read you poem and had a little cry. My son has Autistic Disorder and an Intellectual Disability. He is 17 now and just entering his last year of high school and still toe-walking. I remember vividly the day of the diagnosis and the pediatrician writing long hand on a piece of his letterhead. “To Whom It May Concern, Robert S, has been diagnosed with Infantile Autism, please provide whatever supports and services are available” and he sent me on my way to find those elusive services. We started our journey before ASD was more widely recognized and services relatively easy to find…our journey has had its champions and its road blocks and Lord knows we’ve stumbled and fallen a few times. Thanks for sharing.

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  5. Hello Elizabeth – really good to hear from you. We have the same name, sons around the same age and with a similar diagnosis – and some parallels in our journey from the sound of it. I’m noticing that in the US you say ‘intellectual disability’ where we say ‘learning disability’; that interests me and while I’m not keen on either phrase I think I prefer the US term. But anyway it doesn’t matter what we call it – sounds like we know where each other is. Here, same experience as you back then of getting the diagnosis and being referred on to something that didn’t exist in children’s services. Sadly, 17 years on, I’m now facing the same situation with adult services here. Thanks for reading and sharing…

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    • Hi Kamaida – that must be the lovely Alison T! I’m glad you like the poem and are enjoying the blog. Do you have an autistic child yourself? Are you in Sheffield?

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      • Hi yes i am in sheffield,,I have a 9 year old daughter,, was diagnosed with autism and dyslexia at age of 4,, as she’s getting older theres more questions,, with which I have difficulty in answering, , The frustration, anger and to calm her can be proven difficult, , the repetitive phases she goes through,, the toilets,, fear of lifts,, set ways of eating habits and foods,, the organising and order,, particular with clothing,, when she enters house,,bathroom,, she inspects looking around, checking windows doors,, looking for spiders,, parking my car a certain way,, using certain routes whilst travelling,, list can go on. Ur blog ur writing truly amazung thankyou im not alone

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      • Hi Kam – thanks for your message. I think you’re right that there are more questions and challenges as our children get older and new things emerge which can seem even more puzzling. I know it’s not always possible to compare experiences but I do remember that I found life with Dylan particularly challenging between the ages of 6-10; I think things did get a little easier after that, in terms of Dylan settling and trusting me more. He still has his moments but for the most part life became less of a struggle from around ten years old. The other thing I’d say with Dylan is that it is always one step back, two steps forward; so I’ve noticed that just before he is going to make an improvement or development to something, there will be a little regression and he will slip backwards. So now, if I have a difficult day with Dylan I sometimes reassure myself that he’s perhaps on the verge of a breakthrough with something, and is just slipping a little while he gathers energy. Your daughter will make progress on some of the things you list if not all – and some will stay but it will be different foods or a different order for her clothes, or dragonflies instead of spiders! But I know it’s wearing. Dylan used to have a fixation about routes.He was a little tyrant really – I always had to drive a particular way. I would get really frustrated about this. He still has routes in his head but he’ll accept me driving whichever way I think is best – protest a little, but nothing much. Lovely to make contact with you Kam, Liz

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