The Frog Prince: autism, poetry and transformation

batdetectorIn a recent post reflecting on the causes of autism I referred to ‘magical thinking’.  By this I mean explanations for disability which aren’t based on scientific rationale or evidence but which acquire narrative status across a cultural group or society. In this post I present four poems which represent a mother’s changing view of autism in the years immediately following diagnosis. The post opens with a poem in which I try to make sense of autism through magical thinking. It then traces critical shifts in my understanding through poems written within the first five years of Dylan’s diagnosis and published in my collection, The Bat Detector.

Responding to my son’s autism through poetry has, I believe, shaped my thinking about disability. Writing a poem is a journey and in the course of it I frequently discover things I wasn’t previously aware of.  Furthermore the act of writing is transformative; I am changed not just by what I have written but through the process of writing itself. In this sense poetry can be considered as epistemology (i.e. a ‘way of knowing’) as well as a form governed by aesthetic and other principles.

Poetry is not, of course, my only way of knowing but it is important to me as a creative approach to thinking about autism. Partly this is because poetry allows me to adopt other voices and perspectives, something I have referred to in a previous post as ‘ethnographic practice’. This can be particularly illuminating as a way of knowing about parenting and disability. In this, of course, it is not unique; researchers also engage with other perspectives. However, poetry also allows us to engage with affective (emotional) material and gives us permission to explore our magical as well as scientific thinking. This post considers the contribution which such an epistemological approach can make to our understanding of autism.

*

moonIn the poem below I consider magical thinking as an explanation for autism through reference to an English folk belief that boys born on a moonless Monday become ‘idiot children’ (as they were known in the 19th century).  Dylan was born by the sea and that landscape makes an appearance in the poem. In the first section I use female mythology of the moon in the mother’s attempt to gauge her fertility by lunar cycles.  In the second section of the  poem I refer to the baby missing its opportunity to be born while the moon is visible in the sky (by the time Dylan put in an appearance it had gone).

The third and fourth sections of the poem refer to a trip to France the year after Dylan was born (see also this post).  Dylan was 15 months old and beginning to show symptoms of autism though we didn’t realise this at the time. I remember joking to my husband about the full moon shining on Dylan’s cot at night and us laughing about Dylan emptying the cupboards in the holiday home and arranging the pots. We had no idea of the significance of this. The day at Carnac (a megalithic site aligned with the moon) became legendary in our family history because of the severity of Dylan’s crying that day and our inability to calm him. In the final section of the poem I reflect that the lives of mother and son are somehow bound up with and controlled by the moon.

Moonstruck

Mother know’d ’twas no moon, for she asked another woman that had an almanac, as she did whenever a boy was born to her, because of the saying, ‘No moon, no man’ which made her afeard every man-child she had…  Thomas Hardy, The Return of the Native

i.  Moon Dates

I timed my eggs by the moon,
knew that when it bellied in the sky
my linings would break to maddening blood.

There must have been fog over the sea that June –
something to obscure that bony annulet from my view,
to wrench from my miscounting on it

an alternative computation.
I converted lunations to trimesters,
waited, patiently, for a March moon.

ii.  No-Moon Child

Waters lapping at toe and fist, cast out on a hawser,
syllables form, echoing in the stabbing dark:
I will be the moonstruck man you never wanted,

 the boy feared beyond imagined daughters.
The sea heaved, spilling spring tide

from a silver moon, shivering a swatch of light

to fill the emptiness, the silence of my due night.
Tick, tick. Its fullness splintered back to blackness
and the month stitched a no-moon Monday to his cry.

iii.   Afeard

As I set the child to sleep that night in a white cot
beneath the eaves of a manor house in France
I shuddered at the sight of moon

pooling full through un-curtained glass,
said that I had read this could send a person mad.
What lunacies beamed from that stark land

into his dreaming no-moon skull?
What fingers of leaching light softly thread
around my shuttered sleep into his exposed head?

iv.   No Man

The megaliths at Carnac point to the moon.
How he cried that day at those lunate bones
divining time from the sky’s light –

gouged the terrible sight of those stone fingers
(their silent, commanding point) from his eyes,
then emptied cupboards of annular things,

spread cups and saucers, pans and bowls in complex order
across the floor, moved his planets inch by inch into a
mooncalf heaven, mapped his constellation from these stars.

v.   Moon Life

And now, wordless, inhabiting a world as strange
and far away as moon he greets its mad latescence
with howling wails and wakefulness,

meets the coldness of its hoary stare through fingers
spread across the glass shredding silver,
minting slivers of no-moon in the sky.

His life and mine still timed by moon he lives
within the darkened days between its blooming,
breathes in space between its lunatic albescence.

*

Moonstruck is an example of magical thinking about autism in that it locates cause in folk mythology and nature. The philosophy of the poem is that the mother and child are victims of something which was inevitable and for which they were marked out by a force unknown and larger than them.  The mother and child have no power, or ‘agency’, in this process; they will not resist what has happened or attempt any change and, in this respect, there is an acceptance of the autism. However, this is not a positive acceptance; the actors are passive onlookers, constructed as victims.

In the following poem, by contrast, the mother-narrator does not accept her child’s autism. Although the representation of her son is loving, autism is depicted as something ‘other’ to him; it is an alien force which has taken over the child’s body and stolen the son from the mother.  There is no acceptance of autism – rather the mother is resistant to the idea that autism could be part of her child.  However, it is magical resistance she engages in rather than scientific challenge; the rescue narrative she dreams for her son is as romantic as the explanation she offers for his autism. A section of the poem is presented below.

Breath

 ii

When my son was less than two years old –
just before his autism was diagnosed
and my whole world fell apart as the child
I thought he was (and would become)
slipped suddenly away from me,
like the death of someone known, familiar –
I had a dream (or vision) in the night.
As I slept, became aware of someone
watching me – woke to see at the entrance
of my attic room, standing at the top of the stairs,
a blond-haired boy regarding me silently,
wise and sad-eyed. I knew it was my son –
though older (maybe seven or eight).
Then a voice – not his, but in my head,
like Aslan’s:  Wait, be patient, it said,
I have to go away but will come back
to you one day
.  I sat up straight –

anxious, wanting to hold on,
not let him slip away, be gone.
Then a flicker of breath against
my cheek as he disappeared.

That was years ago:  my son is seven now.
Sometimes I turn – try to catch
him at the top of the attic stairs
looking the way I dreamed he would –
try to conjure from his absent eyes
an answer to the patient watch
I’ve kept for his delivery back.

*

Dylan, seven

Dylan, seven

In the opening section of Breath (not included here) the mother-narrator reflects on her previous loss of a daughter through stillbirth. Breath, then, becomes a poem of sudden loss in which children are stolen away; these losses take place overnight when there is permeability between the living and spirit worlds and souls can cross over. In this sense the loss of the son to autism is constructed as an ‘othering’. The absent-eyed child is an imposter who has taken the place of the lost (non-autistic) child who the mother-narrator prefers.  The non-autistic child is constructed as superior not just to the imposter but to the mother; in this poem, it is the lost child who takes the explanatory narrative (‘I have to go away’) and who is charged with responsibility for managing his own return. The mother simply has to wait. This abnegation of maternal responsibility is part of a construction of the mother as passive victim who has to endure magical fate (Moonstruck) and mystical crime (Breath).

all that's left 002

Dylan in his helmet

In the next poem, instead of magical thinking the mother embraces scientific explanation. The poem uses the language and vocabulary of genetics. Through this, the mother  begins to construct herself as part of her son’s autism. This is not a positive involvement however – rather she fears her  potential responsibility for the wider family and future generations.  The poem explores fertility and reproduction and I relished the opportunity to write about menstruation, ovaries and eggs. However in other respects the poem was difficult for me to write. Reference is made to the mother’s new daughter as well as to the daughter who died; this living daughter is seen as the only ‘normal’ child, with both the dead daughter and the autistic son described as carriers of genetic ‘abnormality’. In this, then,  the mother continues to privilege normalcy over diversity.

I wanted to try and capture the reality of being a mother to an autistic toddler – the days when it’s a struggle to keep going until the release of sleep. While I was writing the poem I forced myself to be very detached about Dylan. At the time he had a policeman’s helmet (not a real one) which he insisted on wearing constantly and which makes an appearance in the poem. I don’t know who bought it for Dylan but I’m pretty sure I wouldn’t have. I came to really dislike that helmet.

Monster

The morning brings stench of broken linings,
blood like a butcher’s shop, thick and liver-brown.
Menstruating again – shedding another
of the last surviving eggs
from the store I was born with.

A geneticist assured me once it was all
a bit of a lottery; told me that in every
woman’s cargo of eggs there are some
that are bad – chance statistics of
abnormality or spontaneous abortion.

One of my long-shot eggs grew hardly
human. Today he is a monster on a train,
wearing a helmet. He emits strange shrieks,
makes bizarre grimaces with his face.
Except for providing food

I cannot connect with him today.
This defect cannot be detected
or tracked back, with certainty,
to the egg. But I know the possibilities –
the endless varieties of bad ovum.

Recall how, years ago, the geneticist
talked me through my still-born
daughter’s post-mortem.  The shock of it:
sheer extent of things gone wrong –
impossible – inside her.

I’d held her: committed her to memory,
through unstoppable tears.  She’s beautiful,
she’s so perfect
I’d said. I remember

how the doctor had touched her left foot,
showed me the odd splay of her toes –

said it sometimes indicated things gone wrong.
Later, the confirmation of ugly words:
fixed flexion deformities, syndactyly,
webbing, micrognathia.  It was the egg,
the geneticist said, that failed to divide:

an extra set of chromosomes –
Triploidy Karyotype XXX.
The only thing normal
reported about her: female genitalia
and reproductive system intact.

Now I have another daughter: she is
my bright and bouncing perfect egg.
Today, mourning my losses, feeling
ache and cramp of blood (the odds
on my eggs being good lengthening)

I fear the gift I have bequeathed:
wonder what the clutch of eggs
inside her holds, whether time-bombs
are already ticking, waiting to release
their hair-sprung triggers and go off.

*

Although the language of the post-mortem report is monstrous the mother finds her daughter ‘beautiful’ and ‘perfect’.  While she cannot connect with the monster on a train we are (twice) told that this is her experience ‘today’; the implication is that, as with ‘ordinary’ parenting, there are good days too.  Here, then, there are chinks of light: the mother finds the disabled child beautiful and claims disability as part of her life history.

dailymail.co.ukThe final poem in this post, Frog Prince, captures further change in the mother’s views as the narrator reflects back on herself over a three year period. The trigger for these reflections is the appearance of a frog in the garden. The poem recounts a real incident which offered a way for me to address perceptions of disability; through the narrative of the tadpoles I explore feelings of denial, responsibility and guilt, as well as raising the issue of the ‘invisibility’ of autism and its emotional impact on parents.  By the end of the poem the mother realises she has moved beyond acceptance of autism to celebration of difference: ‘I no longer wish for transformation’, she reflects, ‘would not plant the kiss’.

Frog Prince

A frog visited me this morning –
sat still as brown stone in the rockery,
rain falling on her pointed head.
I assumed, at first, this frog was there by chance,
her appearance not to do with me.
But she bulked big as a fist until I had to admit
it was probably her third summer,
could date her hatching to the year we’d stashed
a greedy harvest upon our bathroom windowsill.

As the spawn crammed in the plastic boxes, jars and pots
grew inky dense, we’d looked on aghast
at the wriggle and bud of tadpoles
sprouting extra limbs, additional heads –
stood by while some grew monstrously
as they fed on the weakened, selected the grotesque.
Witness and accused in this fishy metamorphosis
I’d closed the bathroom door on the alchemy,
tried to ignore my part in it.

But then, the night the comet came,
I’d rushed to wish into transfigured sky  –
one more try for my miracle,
for something to unravel and re-thread
the tangled wires in my son’s head,
for a word, a gesture, a touch of human love
to issue from his perfect lips, his gilded arms.
But tadpole-skulled, head full of frogs,
I’d  imagined, instead, this simplicity –

that my son had grown two heads, no legs,
been eyeless, deaf – that some strange growth,
or absence, had marked him out, made difference clear.
And in this horror I’d turned them out – stumbled in
to the stagger and slosh of stairs, the weeping garden,
stood beneath a tail of light, frogs falling from me,
their mutant bodies sliding through guilty hands.
Next day I watched birds come at dawn,
their derrick heads bobbing, clean-picking the lawn.

The escaped frog that visited today
brought me in a leap of time to realise
that, since her freedom, things were changed.
The difference this – that I no longer wish
for transformation, would not plant the kiss.

*

wildlife-imaging.co.ukLooking back at these four poems years later I can detect the shifts in thinking which I perhaps wasn’t conscious of at the time but which poetry helped me to explore. Mapping models of thinking about disability onto these poems, you could say that the mother moves from ‘primitive’  beliefs about autism (Moonstruck and Breath) through a Medical Model approach (Monster) to a position more akin to that of Neurodiversity (Frog Prince). While parents may not find it helpful, in the aftermath of diagnosis, to think in terms of philosophical models, applying such thinking retrospectively can be illuminating. The practice of writing creates a reflective space which allows us to record our journey through difficult terrain, thus supporting a process of discovery and transformation.

Reference:

Elizabeth Barrett (2005) The Bat Detector, Wrecking Ball Press
Thomas Hardy (1878) The Return of the Native, Penguin Books

Source of images of frog, tadpoles and moon unknown but appreciated.

‘Autisms’ And Magical Thinking: reflections on cause

hodsock 026The response to an autism diagnosis has changed significantly over the last couple of decades.  When my son was diagnosed 18 years ago the focus was on cause and cure (or ‘intervention’ as it was termed).  Nowadays, the concern tends to be with acceptance and advocacy. While this shift in emphasis can’t alter the emotional impact of diagnosis it can remove the feeling that your child is a problem to be fixed.

I don’t often think about the reasons for my son’s autism anymore and though I still try new things I no longer search for ‘cures’ in the way I once did. Instead, I focus my energy on trying to understand the world from Dylan’s perspective well enough to advocate for him when he needs me to. In this I am in general alignment with the social model of disability which argues that we are better engaged in championing social change than in looking for the cause of (and, by implication, the cure for) autism. From this perspective, a medical model of autism is unhelpful. Medical research, it is argued, is conducted within a deficit framework which problematises the autistic person and privileges ‘normalcy’.  This may (with exceptions) be the case, but  I continue to take an interest in it.  How could I not when I have such a stake in the data?

Ear Infection

I am not saying that this caused it.
It may have been the secret genes
of his tight-lipped father
(another skeleton son in an expensive cupboard school)
or the vaccine-loaded needle the GP pushed into his legs;
it may have been the 72 hours I laboured,
offering him the O-Ring world slow centimetre by centimetre.
I cannot be absolutely sure of cause.
But when I knew –  had a name for all that was not right –
it was those three days, three nights merging that I thought about.

Alone, brimming with a second child,
I was filling sticky syringes with banana medicine,
counting the headscan out (103, 104…),
fanning his hot red face, laying on lukewarm cloths.
This small child with the legs he had only just found,
swaying like a drunk, stumbling across hard tiles
to where I stood, holding desperately onto my life
(solid, dependable objects: teabag, tap, kettle). Turned at his cry,
scooped that small body up to live those days by me:
no fluid, no food, no sleep. Until, on the third day, it was over.

Neither of us thought much about it after
when he didn’t speak. Didn’t puzzle
when he stopped showing us the pictures in his books,
preferring to sort things out and line them up –
yellows, blues, reds.
Didn’t connect that by the time his sister was born
he could barely point or wave.
But later, swallowing the bitter pill of diagnosis,
I took the sickly forever lozenge
remembering those three jumbled days and nights.

I am not saying this caused it
but tonight I am gripped numb; unable to hold
my 15 month daughter  – her burning body familiar,
the high whine crazing my scalp – as she refuses,
the way her brother did, dose after dose.
It is the same pain I weep with, the same exhaustion
of the same three nights without sleep –
their lives same, fusing, and the difference me:
the fear re-wiring my mother love,
unwomanning my hands, arms, head. 

 

The poem was my first attempt at making sense of Dylan’s autism.  I must have written it within a year of his diagnosis as it was included, in all its rawness, in my first poetry collection. Reading it now I’m struck by what I left out of the poem.  I’ll return to that later – first though, some medical research.

Autism Clusters: seizures, infections and psychiatry

The link at the end of this post is to a research paper on comorbidity clusters in autism.  The study used health records of patients over 15 years of age with a diagnosis of autistic spectrum disorder to investigate the co-occurrence of other medical conditions with autism. Based on their study the authors claim to have identified three distinct clusters of autism within the population:  a group of patients  whose symptoms are associated with seizure disorders (such as epilepsy); a group who have increased rates of bowel, infectious ear and respiratory symptoms; and a third group of children who have higher levels of psychiatric disorders (including ADHD, depression and schizophrenia).

The conceptualisation of autism as a single ‘spectrum’ condition is sometimes considered unhelpful: ‘when you’ve met one autistic person, you’ve met one autistic person’ is frequently quoted as a proviso to the spectrum.  Isaac Kohane, one of the authors of the cluster study, claims that their research shows that rather than there being one autism ‘there are several autisms, each with its own specific course.’  (reported in Miller, 2013). Furthermore, the data suggest that distinct contributory factors may be involved in these ‘autisms’ with some linked to genetic and some to environmental factors.

Miller’s report on the study suggests that ‘simple patterns can emerge from even the most chaotic, complex data’. It is certainly true that there is elegance and simplicity in the three clusters described by the study. Such patterns are compelling and can be seductive, but to what extent can they impose some order on the chaos and confusion of a poem?

Making Simple:   Dylan and Cluster Two

Dylan hasn’t developed epilepsy or other seizure disorders (group one in the cluster study) and he doesn’t have a diagnosis of ADHD or present with any of the psychiatric disorders associated with group three.  He could, however, be placed in the second research sub-group which is characterised  by multisystem disorders such as gastrointestinal and auditory infections (Doshi-Valez, 2013).

hodsock 028My poem Ear Infection describes such a multisystem disorder and suggests it as a possible cause of Dylan’s autism. I’ve met other parents who have mentioned ear infection and/or abnormally high temperature as something which they particularly remember from their child’s pre-diagnosis days. While many babies suffer from such infections, these parents report particularly dramatic or acute incidents.  As well as the ear infection referred to in my poem there was another event on a day which my husband and I named ‘Black Monday’. It happened soon after the three day ear infection (Dylan was around 14 months old) and appeared to again involve Dylan’s ears/respiratory system. He had a temperature and was inconsolable with crying jags which lasted for 24 hours.  On both these occasions the extent of the infections, and their grip on Dylan, seemed to be out of the ordinary.

Although I was a new mother I was becoming used to such drama. When Dylan was just four months old I had lived through an even scarier ‘multisystem disorder’.  Up to that point, apart from being colicky, my baby had been well. At four months old I took Dylan to the GP for his vaccine shots for Polio and Hib (a strain of meningitis). The next day my baby wouldn’t feed; he was listless, floppy and running a temperature. Later that day he developed purple bruising on his legs. I delayed a couple of hours not realising the significance – by the end of the day, though, with Dylan clearly not well, I took him to the GP.   Dylan was admitted to hospital immediately where he was treated for meningococcal septicaemia.

I don’t understand why Dylan’s meningitis didn’t make it into the poem.  For whatever reason, when I wrote the poem, it was the ear infection which seemed more important. Now, if someone asks me what the cause of Dylan’s autism is I am far more likely to say ‘maybe childhood meningitis’.  It interests me how we have short and longer-term ways of making sense of our lives and experiences. I’m not sure our retrospective meaning-making is necessarily any more reliable than our immediate response to an event, except that it has had longer to be tested.

As Dylan has grown up it has become clear that he has a significant learning disability and a range of difficulties with communication which involve the production of speech as much as (perhaps more than) the desire to communicate.  The pattern of Dylan’s disability, particularly in relation to his language and learning disability, now seems to me to be characteristic of the damage which can occur to the brain during meningitis. My longer-term view that Dylan’s autism arises from the meningitis episode is largely based on my observations of the way in which his disability affects him (something which was not clear at four months or even four years old).

While I don’t mention meningitis in my poem I do include a ‘vaccine-loaded needle’. This doesn’t refer only to the Hib shot, however.  I can almost hear you (or perhaps myself) exclaim: You mean you let him have more?  I did assume, initially, that it was the Hib shot that caused Dylan’s meningitis. The investigations at the time, however,  concluded that the strain of meningitis which Dylan contracted was different to the strain which the Hib vaccine was used against. There was no possibility that the meningitis could have been triggered by the Hib vaccine I was informed; it was simply coincidence. I was told this repeatedly by medical professionals and, in the end, their  reassurance was enough for me to let Dylan have his MMR vaccine the following year.

The ear infection and ‘Black Monday’  both happened in the aftermath of the MMR shot.  I had a baby, it seemed, who did not cope well with vaccines. Even the GP, this time, advised caution; best not continue with the top-up shots, he said – at least Dylan will have got some protection. So the vaccine programme was discontinued. Later that year, after Dylan was diagnosed autistic, I claimed for vaccine damage but was unsuccessful on the grounds that the strains of meningitis had been different and there was no evidence that MMR was involved.

I was left with a lot of questions. Could the attack on Dylan’s system of the ear infection, ‘Black Monday’ or meningococcal septicaemia have caused Dylan’s learning disability, language disorder and autistic behaviour?  And if so were the effects cumulative or from just one of those infections? Were the infections triggered by childhood vaccines? And if so, was there something which made Dylan particularly vulnerable? Or were the infections entirely unrelated to Dylan’s autism –  just more crap cards from chance’s random hand?

Looking back at my poem I am struck by its uncertainty. The mother doesn’t know what the relationship between genetic and environmental factors might be and she acknowledges that either or both could be involved. What she does know, though, is how vulnerable a small child can be and how helpless a parent feels when things go wrong.

Making Difficulties: the Complexity of Cause

I am not anti-vaccine as a result of Dylan’s experience;  I recognise their importance to public health. However, I now believe there may be some babies whose immune systems are not sufficiently developed, or which are in some way compromised, and who may therefore be particularly vulnerable to early vaccination. For this reason, I didn’t have my daughter vaccinated until I judged the risk of disease outweighed the possible danger from an immature immune system.

hodsock 027Once Dylan’s vaccines stopped he developed an astounding physical robustness and since starting school has rarely been ill. His time in ‘cluster two’ was therefore only brief.  Other children, by contrast, may move between clusters or exhibit symptoms from multiple clusters over their lifetime;  someone with an autism diagnosis, for example, could begin in group two with a bowel disorder but move into group one at adolescence with the onset of epilepsy. Indeed, the data reported in the Doshe-Velez study found that a significant correlation existed between gastrointestinal and seizure disorders (though not between psychiatric and seizure disorders).

The authors of the cluster study suggest that different genetic and environmental causes may be involved in different ‘autisms’. Separating out the possible contributory factors for Dylan, however, seems fraught with difficulty. My poem Ear Infection weighed genetic as well as environmental factors in its reflections on cause and in the final stanza I refer to the impact of autism beyond Dylan  (once there is an autism diagnosis within the family it is natural, I think, to consider whether others may be affected, especially younger siblings).  Years after I wrote the poem I received some news which suggested that genetic factors may indeed have been at play in Dylan’s case, at least in part.

Dylan has two half-brothers; although I have never had contact with them what I knew about one of the boys from Dylan’s father made me wonder, in the aftermath of Dylan’s diagnosis, whether he might also be at least mildly affected by autism. In my poem I make passing reference to this.  The contact between Dylan’s father and myself was limited to financial arrangements while Dylan was growing up. However,  a few years ago an administrative error with Dylan’s maintenance payments led us to have a telephone conversation.  Dylan’s oldest half-brother, I discovered (now an adult),  had been diagnosed with Asperger’s Syndrome  and Dylan’s other half-brother was seriously ill with the bowel disorder Crohn’s disease.

More Chaos

We are a long way from the days when it was suggested that ‘refrigerator mothers’ were the cause of autism in children. However, in the absence of satisfactory scientific explanations I understand how these ‘magical’ explanations can arise.  For a while I had my own. In my poem I refer to the very long labour which preceded Dylan’s birth. I went into labour on cue on the evening of Friday 11th March at tea time. Later that evening I went into my local hospital but as my labour wasn’t progressing  was sent home again. I remained at home for the next two days while my contractions stopped and started. I didn’t want to go back into the hospital while things seemed to be progressing so slowly. In the end, though, I was persuaded to return on the Sunday evening.  At that point I had been in labour for two days and was exhausted. At around 8pm that evening, with no sign of me delivering, a midwife broke my waters. Although that sped things up, it would be another 4.5 hours before Dylan was born.

At one point, though, it had seemed that Dylan would be born earlier; just before midnight I managed to deliver the baby’s head.  ‘Here’s the head’ I heard the midwife announce. Then a lot of noise and exclamation and chaos as, apparently, the head disappeared again. In all her career, the midwife said, she had never seen a head be born and then withdraw back into the birth canal. I remember her checking Dylan’s heart and remarking that I had a very relaxed baby: ‘this little one ought to be distressed by now’. Afterwards, when Dylan was finally delivered, the disappearance of the head was passed around as an amusing story: ‘that baby took one look at the world and decided not to bother’ laughed my midwife.

Afterwards, back at home with my baby, I listened incredulous one afternoon to a radio programme telling a folk tale of how, in aboriginal culture, the grievances of the father are believed, sometimes, to obstruct the birth of the baby. After Dylan’s diagnosis, I would remember this and turn it to magical thinking as damning of a reluctant father as a refrigerator mother.

Making Sense

hodsock 007Of course I know, now, that is nonsense. I’m no nearer to making sense of Dylan’s autism though.  What difference would it make to know? a colleague asked me this week. Well, the research paper I’ve been discussing in this post suggests that conceptualising multiple autisms could help identify different potential interventions for people affected by autism (Miller, 2013). The three autisms that were identified as part of the study, for example, correlated with different levels of expressive language disorder and the timing of developmental delays. As I noted earlier, it is Dylan’s pattern of language and learning disability which I think has turned out to be most significant, not his autism, so this is of particular interest to me. If making sense of the reason for Dylan’s disability can help me to support him more effectively, that could make a difference. While I may no longer focus attention on cause or cure, medical research into autism still has a role to play in supporting Dylan and informing my advocacy on his behalf.

 

 

References:
Elizabeth Barrett (1998) ‘Ear Infection’  in Barrett, Elizabeth (1998) Walking on Tiptoe, Staple First Editions

Finale Doshi-Velez, Yaorong Ge and Isaac Kohane (2013) ‘Comorbidity Clusters in Autism Spectrum Disorders: An Electronic Health Record Time-Series Analysis’. Pediatrics
http://pediatrics.aappublications.org/content/early/2013/12/03/peds.2013-0819.abstract

Jake Miller, ‘Investigating clinical histories shows surprising evidence of multiple, distinct ‘autisms’. December 19th 2013.
http://hms.harvard.edu/news/autism-clusters-12-19-13?utm_source=SilverpopMailing&utm_medium=email&utm_campaign=12.24.daily%20(1)