The Bat that flits at close of Eve
Has left the Brain that won’t Believe.
William Blake, Auguries of Innocence
In this week’s post I shift the emphasis from the child to the parents. Based on my experience of supporting Dylan I suggest that ‘dialogue’ and ‘space’ are crucial to carers but can be difficult to prioritise. The pressure on relationships of raising an autistic child is well-documented and it is frequently suggested that the divorce rate for couples with an autistic child is significantly higher than for others. I revisit these assumptions and reflect on the relationship between autism and my own divorce.
Supporting the Sole Carer
In the 17 years since my son was diagnosed as autistic I have faced many challenging situations but by far the most stressful has been Dylan’s transition to adult services. Despite spending a huge amount of time and effort trying to get this right, when Dylan left school last summer I had still not managed to secure a placement for him. As well as worrying about the potential impact on Dylan, as a single parent who needs to work full time I became increasingly anxious about how I was going to return to my job after the summer. In August, experiencing feelings of frustration and helplessness, I decided to see a counsellor.
As a single parent I’ve found counselling useful in the past as it provides me with a space for reflection and review. One of the things that I can miss, as a lone carer, is somebody to mull things over with. Without such dialogue my decisions go unchallenged and while that may be empowering in some contexts in other situations it is scary. Making decisions about a child’s future – especially a disabled child – falls, without doubt, into the ‘scary’ category. Although there are good friends and willing listeners in my life, I try to protect these relationships as much as I can from the endless and often circular debates I have with myself about Dylan’s care. Talking to somebody neutral, I hoped, might help me to identify new ways of thinking about a stressful situation.
Although Dylan’s day care still isn’t completely settled the situation is much brighter. I have some interim provision in place and I have been able to get back to work. Life feels like less of a crisis and more the struggle and juggle I am used to. I still have some of the free counselling sessions I am entitled to (through an employer scheme) remaining and the other day I was chewing over some of my continuing dilemmas about Dylan’s care when the counsellor interrupted: “just a minute. Where are you in all this?” I seemed to spend so much time walking in Dylan’s shoes, she observed, that perhaps I’d forgotten where I’d left my own? “Where is your voice in this process?” she asked. This was one of those moments that make the effort of counselling worthwhile; a question I wouldn’t have asked and that stopped me in my tracks.
I always argue that when I try to see the world through Dylan’s eyes I am learning about myself as much as I am learning about him. The time I spend walking in Dylan’s shoes not only helps me to understand his world but alters the shape of my own feet. I am constantly stretching and shrinking and distressing and polishing my shoes, depending on what I’ve learned from wearing Dylan’s for a while. Perhaps if I sometimes forget where I’ve left my own it’s because they don’t fit anymore. But I admitted to the counsellor that it was easy to be absorbed by this process. While I had set up a blog with the intention of writing from the perspective of a carer, for example, my posts often wandered into Dylan’s world. I reflected on a recent blog post about language in which I had reported Dylan’s attempts at speech but erased my own voice from the conversation completely. Could it be the case that in order to give voice to Dylan I had to silence my own?
Making Space for the Carer (In and Out of Marriage)
Since then I’ve been reflecting on the importance of space to carers. In particular, I’ve been asking myself whether it’s always harder to protect personal space if you are a sole carer, or whether all carers, including couples, find it difficult to keep a separate space for themselves. Perhaps inevitably I’ve been comparing my recent years as a single carer to my earlier experience while married, and I’ve contrasted my own experience with my outsider observations of others.
One memory I keep having is a vignette from last summer. In this memory I am watching a family with a disabled child waiting to disembark from the ferry as we arrive in France. It has been a long crossing and it’s late afternoon. Their child is younger than Dylan – maybe ten – and clearly tired and fed up; he is hanging heavily from his father’s arms, knees buckling in protest, as we wait in the stairwell for the doors to the car deck to open. My attention is taken by the child’s parents. They are staring silently ahead at the metal doors, as if willing them to open. They don’t speak or look at each other. I think I recognise the dynamic between them of the exhaustion of one parent feeding the exhaustion of the other. I remember to myself how couples can sometimes mirror each other emotionally and aggravate rather than relieve difficult states of mind: frustration, anxiety, tiredness. I imagine to myself that they have become temporarily locked together in a negative space and in that moment I feel glad that I am alone with Dylan. He is tired too and impatient for the doors to open. I am anxious about the drive ahead of me. But at least I can’t drag down anyone else or let myself be dragged down by this; alone, perhaps, there is a space into which I cannot let myself fall?
I’m not being smug about being single; I realise this is only a part of the picture and that on the other side of the coin there’s sharing and support. I know a number of families living with autism where the parents have stayed together and are a terrific resource for each other and for their child. Clearly this is the best of situations. For a long time I believed that, statistically, these families were the exception rather than the rule. I once read that 95 per cent of marriages affected by autism end in divorce and the figure of an 80 per cent divorce rate is regularly cited in the literature. At various times I’ve looked for the source of these statistics (which seem high to me) but have never been able to verify them. When I’ve mentioned these data to friends who are living with autism, however, they’ve never expressed surprise. My lived experience would also tend to bear out a higher than usual divorce rate among parents of autistic children.
Data from recent studies suggests that the divorce rate among families with autism is not as high as has previously been thought. In 2010 a US study claimed that 64 per cent of parents with an autistic child stay together, compared to 65 per cent of couples not affected by autism (Freedman, 2010). This claim to almost negligible difference in divorce rates is not borne out, however, by another study conducted the same year (again US-based) which suggested a divorce rate for couples with an autistic child of 24 per cent compared to 14 per cent for couples without an autistic child (Hartley, 2010). I haven’t been able to find any data for the divorce rate among couples with an autistic child in England and Wales but the overall divorce rate was running at 42 per cent in 2012 (Office for National Statistics). Although we cannot extrapolate directly from the US studies to the UK, it seems fair to suggest that while the divorce rate for families living with autism in the UK is unlikely to be as high as has previously been claimed, it may well be higher than for families who do not have an autistic child.
Hartley’s study of divorce rates in the US suggested that the differential between families with and without autism may be explained by the higher prolonged risk of divorce faced by families living with autism (Hartley, 2010). While all marriages face a certain amount of stress when children are young and dependent on their parents, it is suggested, this usually reduces as children reach adulthood, and marriages which have managed to survive the early years are then less at risk of ending in divorce. By contrast, the stress on families living with autism often continues as the autistic child becomes an adult; where the person with autism continues to be dependent on parental support, stresses on the parents’ marriage also continue.
The implications of this seem to me to be clear. Families make an enormous contribution to the well-being and flourishing of people with autism; as well as the economic commitment of, for example, personal support and housing, they make a lifelong emotional investment. But this can come at a high cost to the health and well-being of carers and families (in some tragic cases extracting the highest cost). If, as the research suggests, the toll taken on some families takes place over the long term, surely as a compassionate as well as rational society we should provide continuing support?
The Rock of Values
I’m aware, of course, that not all marriages where there is an autistic child in the family need this support – and, indeed, that not all couples could be helped by this. Dylan was ten years old when my husband and I divorced which makes my marriage an early casualty rather than a result of prolonged stress. While my marriage wasn’t a casualty of autism directly, I do believe it played a part; for some people it is perhaps not the long-term stress of autism which weakens a relationship but the stresses which it exposes. Having an autistic child, I would suggest, challenges us at a very fundamental level; it requires us to reflect on what it means to be human and demands that we examine our core values. The aftermath of an autism diagnosis – not unlike bereavement – invites us to inhabit some dark places of the spirit. For me this involved a radical review of how I had lived my life and what was important to me for the future. Having an autistic child was certainly not an experience I was going to survive unchanged.
In an earlier post about diagnosis I referred to ‘Ordinary People’, a film which focuses on the response of grieving parents to the death of their son in a boating accident. The film explores the different coping mechanisms of the father and mother and the way in the months following the accident they become increasingly estranged. As the family falls apart the father follows his son into counselling; acknowledging the impact of the bereavement on the family, he tells his wife that he is no longer sure he knows who she is or whether he loves her anymore. By the end of the film, the marriage has broken down. Perhaps, the father tells the counsellor, they would all have been OK if the boating accident had never happened. They had been happy before: a perfect couple, people had called them.
In a similar way I could ask whether, if my husband and I hadn’t been tested so fundamentally, we would have been OK. Perhaps, had life continued as we’d thought it promised, the differences between us would never have revealed themselves. But, as I would argue, autism challenges us at the core of who we are and exposes our basic values. In our approach to disability (medical to social model), selection of therapies (behaviourist to constructivist), choice of education and care, we reveal ourselves. Is it so surprising that in this process some of us should develop or discover things about ourselves or our partners that we hadn’t previously known? This is not in itself , of course, a reason for a relationship to break down. However, a realisation that you don’t share the same fundamental values as the person with whom you are trying to co-parent a child with autism may be. There is something about the nature of autism which demands engagement with our fundamental selves. Nothing else will do. It is on this rock of values, I would suggest, that partnerships can come to grief.
The Bat Detector
Some years before my marriage ended, while Dylan and my daughter were still young, I wrote a sequence of poems using the metaphor of detecting bats to explore the ways in which communication can be disrupted or breakdown within a family living with autism. The sequence is focused on a period of time when my ex-husband was building an electronic box which would translate the sound of bats to a frequency which we could hear (bat calls are in ultrasound which the human ear can’t hear). It struck me as ironic that he was going to such lengths to hear bats when there were such profound obstacles to communication with Dylan, so I used the bat detecting as a metaphor for our relationship with each other and the silent child.
The opening poem in the sequence focuses on the failure of communication between a couple as the woman struggles to care for their small children while the man builds a bat detector. Although the sequence concludes optimistically with the couple finding new and creative ways of communicating with their son and with each other, the opening poem deals with the sort of issues I have raised in this post: the values of caring; support for carers; and a space away from the role of carer. Although the poem focuses on the female narrator’s need for space, it could equally have been written from the perspective of the person building the bat detector. The bat detector in the picture isn’t the same as the one in the poem; when my husband and I divorced, he got to keep the bat detector, and (years later) I bought myself this new – and improved – version.
The Bat Detector
At the weekend you audit the parts –
list resistor, capacitor and circuit board,
order pieces of kit on the kitchen table,
collect screwdrivers and knives.
You are building a Bat Detector –
a Magenta Mark II with built-in speaker
and volume control. Straightforward assembly –
some soldering, cutting and drilling of holes.
You show me the leaflet; point to a picture
of a small plastic box with two dials,
one marked with kHz, and tell me how different
species register on different frequencies –
that our ears hear only as high as 20,
but above that, in a band of ultrasound,
we will find the call of Pipistrelle, Horseshoe,
Daubenton’s and Natterer’s bats.
Our detector will convert these calls for us.
We will hear them chatter at dusk, before
the roost, pick up the din of their ‘feeding buzz’.
We will hear the high-pitched squeak of baby bats
calling for their mother. You are absorbed by this –
work all afternoon drilling the casing,
soldering resistors and chips on a copper circuit,
manipulating tweezers to thread thin wire.
I stumble, clumsy, through the house
collecting toys and nappies. I heave and sigh.
I wash the pots and stir the saucepans,
fiddle with exhausted pens, a late assignment.
I break and snap. I play peek-a-boo, show
the children how to match their shape blocks,
push them through. I retreat to the attic, hang
upright by my thumbs. I need support from you.
We have a child with two year’s worth of words
and another, older, who does not understand
the social order, cannot play or speak.
You are fixing frequencies on your box –
tuning us out, neglecting to hear your son’s squeak.
You are adjusting your volume control, turning
down the side of me, wailing on long wave –
pitching my 20kHz calls down the stairs.
Barrett, E. (2005) ‘The Bat Detector’ in The Bat Detector, Wrecking Ball Press
Freedman, B.H. et al (2010) ‘Relationship Status Among Parents of Children with Autism Spectrum Disorders: A Population-Based Study’ International Meeting for Autism Research
Hartley, S. L et al (2010) ‘The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 24 (4) 449-457
Sources of bat images unknown but appreciated.