The response to an autism diagnosis has changed significantly over the last couple of decades in the UK. 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?
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).
My 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.
Once 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.
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 speeded 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 (while it was still mother’s day) 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.
Of 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 treatments 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.
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
Jake Miller, ‘Investigating clinical histories shows surprising evidence of multiple, distinct ‘autisms’. December 19th 2013.