Danny's People, page 17
He was a skilled and humorous chair of the workshop and gave me a warm greeting, based on a small amount of prior correspondence: ‘Virginia, do you hug?’
I have learned to use this phrase with others, autistic and neurotypical alike, in moments when one should not assume how comfortable or uncomfortable another person might be with tactile greetings.
Another thing I took away and treasured was Ari’s willingness, after the day’s events and when no doubt exhausted, to sit together in the hotel lobby while he waited for a cab, and to respond patiently to my barrage of questions. He was kind and articulate, patient and friendly. His social stamina exceeded my own, which probably isn’t what the old textbooks would have predicted.
But foremost among all of this was my good fortune in meeting a number of the people in the audience, the ASAN members who were there to listen rather than to speak. Some of us went for a drink afterwards – they invited me and I was on cloud nine. I expect I was a curiosity, a middle-aged Brit who’d come all the way from England even though the proceedings were going to be made available later on the internet. They were eager to tell me their stories. A troubled young man who was deeply alienated within his family, a warm and funny woman who teased me, a brainy scientist who had a biochemical theory about autism that was way beyond me, and so on.
At my next supervision, Mike asked me how the conference went.
‘Oh it was great,’ I enthused. ‘I met some wonderful people.’
Just for a moment I think I saw a flash of consternation cross his face. I had to remember his point of view – that he didn’t source the funds for me simply so that I could go out drinking with some nice folk in Boston. I gathered myself, and then outlined many of the things I learned from the speeches, and explained how valuable they would prove to be for my thesis.
Above all, what I took back was a greater understanding of the ways in which the scientific community, for all its emphasis on objectivity, can be unconsciously biased. Scientific data – which is supposedly beyond subjectivity – may actually be as open to interpretation as anything else. And in autism research, the deep error has been to assume that anything that is not ‘normal’ is by definition wrong, inferior, rather than just different, or even superior. Take, for example, some research I first heard about at the workshop.
The study had looked at how people behave in their charitable giving, according to whether or not they were being observed at the time of making a donation.6 Neurotypicals varied their levels of generosity according to whether or not they were being watched. Seemingly keen to be regarded as generous, their donations increased when observed. Autistics, in contrast, gave consistently, with or without an audience. So the conclusion I would draw is that autistics are less preoccupied with what others will think of them than are NTs. But the researchers were more interested in the alleged ‘inappropriateness’ of the autistic behaviour. Unconscious bias towards NT behaviour occluded the researchers’ ability to identify something valuable in how the autistics had behaved. There was no recognition that susceptibility to what others might think could be a sign of weakness and potential hypocrisy.
Another example in a similar vein is a study about the impact of oxytocin spray as a potential therapy for autistic people. The study found that oxytocin induced ‘more appropriate social behaviour and affect’.7 But what was this allegedly ‘appropriate’ behaviour? Having scrutinised the study, Michelle Dawson reached a very different conclusion. With characteristic humour, she identified and ridiculed the researchers’ bias by pointing out that, actually, the autistics merely became greedier and more competitive in order to win:
They learned and displayed selfishness and hypocrisy and us-vs-them thinking. Their objectivity, fairness, and altruism were – temporarily – cured.8
35
SURGERY
The regime of daily flushes through the tube in Danny’s side, which had seemed so promising back in 2010, started to fail after a year. By summer 2012, Danny’s pain and violence levels seemed to escalate exponentially; he had an episode of dramatic bleeding from his rectum and thereafter his tube site was constantly leaking blood and faeces. We made repeated trips to A&E, having been bounced around various consultants who seemed reluctant to do much.
But suddenly everything changed. We finally had a long-promised appointment with Professor Knowles, consultant surgeon at the Royal London Hospital. Within five minutes of seeing Danny and hearing from me, he said: ‘We’ve reached the end of the road. His bowel isn’t working, the tube isn’t functioning, and it’s obviously urgent.’
Danny needed to undergo surgery to create a stoma, whereby his faeces would flow from an opening in the side of his abdomen into an external bag. This ileostomy, Professor Knowles’s letter said, was ‘the least destructive and safest measure that is best guaranteed to rectify the problem’.
Finally a doctor was saying the things that, deep down, I knew to be true. Danny should have a bag. No more enemas. No more flushes through a tube that had stopped working. No more oozing of blood and excrement down his side. And – please oh please – no more pain?
Corey and I stayed with Danny in Intensive Care on the night after the surgery. The room seemed vast, excessively lit, full of murmurs and bleeps and the quiet thrumming of machinery. I lay beside Danny, having abandoned my mattress on the floor, in answer to his gesture for me to join him in his bed to hold him. Behind us, Corey lay on a second mattress, with us once again to face this latest challenge together. The nurse was serene and accommodating about this arrangement, and kept vigil over us with extraordinary calm. She really was called Angel.
I slept fitfully. I dreamt I was telling Ingrid all that had been happening. When I woke, I wished so much that I could see her and talk to her. And then immediately I was overcome with a huge weary certainty about my life. I wanted to stop doing all the things I had been doing in the wider world for over a decade. I had no energy or desire left to go to the meetings, to read the policy documents, to engage in the politics of disability and the autism movement. I was done in. It was a transient certainty, but at that point I started to feel a slow undertow of yearning – to write about the people in this book, to tell of the loves and connections that joined us in humanity. From then on, each time I was on the verge of being drawn into the fray more intensively, taking small tentative steps towards exploring job possibilities, or engaging in a new project, something would snap inside, as if I’d been stretching on an elastic tether as far as I could, only to find it pulling me back into a place of solitude and reflection.
Our stay in hospital didn’t go smoothly. Although the operation seemed to go well, and Danny didn’t seem too fazed by the ileostomy bag, he started post-operative projectile vomiting on the second day, and continued to do so for over a week.
The professor was on holiday, and at first the more junior doctors thought that Danny’s vomiting was just a reaction to the anaesthetic. As the days wore on, and no amount of anti-emetic medication seemed to help, my worry started to build. Would his gut ever get its act together? Would he ever be able to eat his beloved crisps again? When Professor Knowles returned, he examined the charts, listened to our description of the symptoms, and said simply, ‘Ileus. He’s in ileus.’ (Paralytic ileus – as it used to be termed when I was a junior nurse – is when the intestine goes on strike and is unable to pulsate and project its contents onwards.)
Finally, Danny’s small intestine started to work again. But the experience of ten days of this massive ‘overreaction’ to surgery revealed a new feature of Danny’s problems. A referral letter from Professor Knowles to his specialist colleague said:
All his situations are complicated by the autism, but what we now know also is that he has profound small bowel dysmotility and went into horrendous ileus after surgery. He has recently been treated for bacterial overgrowth for a worsening of his symptoms of pain … [my italics]
What we now know.
What we now know.
Both reassuring and devastating.
We know more about why Danny has had pain for so long. That’s good.
But we know too that the whole of his intestinal tract is compromised, and vulnerable to the twin challenges of bacterial build-up and a propensity to shut down – both of which cause dreadful pain. Not good.
I tucked my copy of this letter into my Filofax and for several years carried it with me. What we now know.
No more ‘Am I making too much fuss?’ Instead, the need for vigilance in monitoring all his symptoms, adjusting the medication and pain relief, restricting his diet drastically. And an even greater need to relish the times when he is well and cheerful, when his exuberance and humour return, when he jumps for joy on a windy day, or smiles to hear the Beatles, and shouts with glee on the swing.
*
Danny didn’t take long to get accustomed to having a stoma bag. After a few dramatic occasions when he experimented with removing it, he soon settled. The need for a mass clear-up and shower (he hates showers), and the interruption while bedsheets were changed, proved an effective disincentive to further tampering with the bag – although of course accidents will always happen. In any case, I found these early episodes of mayhem reassuringly straightforward, because they proved I had been right in my assertion to the medics pre-operatively that ‘I would rather clear away a houseful of shit than have Danny go through this much pain.’
There was a short period of gung-ho confidence, and then we were back in the land of torment again. Professor Knowles’s referral to his colleague presaged a journey of discovery in which we would gradually unravel the layers of challenges that Danny faced. We would be referred to new doctors in neurology (for input on pain management), allergy and immunology (for an insight into the nature of, and how best to respond to, his altered immune state) and rheumatology (which confirmed a condition of hypermobility). They would all shed light on a condition of the connective tissue (Ehlers-Danlos syndrome, or EDS), with which autism may – or may not – be intimately connected.1
This journey had a direct parallel in the thesis I was writing. I was convinced that all Danny’s suffering was linked to his medical problems, rather than to his autism or learning disability. I also noticed that many who espoused treatment for autism were actually often referring to ‘add-ons’ – epilepsy, gut problems, anxiety – conditions that didn’t fall within the core symptoms that confer a diagnosis of autism. When calling for treatment, or cure, they were really calling for treatment for additional conditions that some – but not all – autistic people experience. And, I might add, these were also conditions that some – but not all – neurotypical people experience.
This difference between the core condition and susceptibility to other conditions is so important that it justifies further analogies to drive home the point: if ovarian cancer is a problem to be treated, you do just that. What you do not do is pathologise all women. And in heritable conditions such as sickle-cell, it is sensible to seek out susceptibility where a causative agent is known, rather than eliminating an entire ethnic group on account of their particular vulnerability.2
I have used this argument in my doctoral research, in my writing and in public forums.3 And over the years I have noticed that these ideas are gaining some traction. A contemporary multi-site consortium uses the language of ‘comorbidities’ to justify genetic research, rather than talking about treatment or cure of autism itself.4
So if the spotlight is on the conditions to which autistic people are particularly susceptible, but not on their core autistic and/or learning-disabled being, does that clear a way for genetic research to progress full steam ahead?
I still have some nagging worries about all of this. My concern is twofold.
First, it is possible that some of the comorbidities are triggered by social/environmental conditions, rather than by the biochemistry of the autistic person. Take depression and anxiety, for example. A recent study found a strong link between the quality of life of autistic people and the incidence of these mental health problems.5 Research has also found a correlation between suicidality and the degree to which autistic people have felt impelled to disguise or hide their autism.6 If autistic people did not feel so stigmatised, bullied, excluded, might this not reduce their levels of depression and anxiety, which in turn would improve their quality of life? Do we need to look at their genes, or do we need to look at the social attitudes that undermine their self-esteem, access to employment or a sense of belonging? Or, if we are looking at genes, and pouring millions of pounds into the research effort, should we not at least pour an equal amount of money into anti-bullying campaigns, broader anti-discrimination initiatives and appropriate skills training for teachers, social workers, employers? An autistic person’s meltdowns will be prevented or handled far more effectively by a skilled and empathetic practitioner who has been trained, supervised and rewarded appropriately, than by an untrained, unsupervised, low-paid and undervalued member of staff (which is what happens far too often in the current social care system).
My second concern relates to the list of comorbidities that are lumped together as medical issues. In the current diagnostic criteria, learning disability and challenging behaviour are ranged alongside epilepsy and gastrointestinal problems. But only the latter are potentially fatal, organic illnesses that are independent of external conditions, and therefore I consider epilepsy and gastrointestinal problems to be conceptually distinct from other areas in which some autistic people experience difficulties.
I was thinking a lot about this in the autumn of 2012, when the dual preoccupation of my ethics research and Danny’s illness came to a head, and I wrote the following in my journal.
30 November 2012
I am imagining a future world in which prospective mothers, thanks to pre-implantation genetic diagnosis, will be forearmed with information that their future child will have a debilitating gut problem along with autism and learning disability. That the autism and learning disability may render him charming, adorable, wonderful and capable of great joy, but that the gut problem will blight his life, bring on violence and make those around him frightened of him – from time to time.
If I had been told this before Danny was born, what would I have done?
Would I have been cruel to continue with the pregnancy in the knowledge of future pain, or would I have been right to emphasise the profound compensation, for him and those around him, brought by all the joy and pleasure he would experience and bring to others?
I am so very glad I did not have this information when I was pregnant, and did not have to make a choice.
36
SPRING AND SUMMER 2013
It seems I was in a period of intense introspection during these months, judging by the frequency of my journal entries. Some of what I wrote is as follows.
15 May 2013
An envelope from the DWP (Dept. for Work and Pensions) contains some excellent news. They have looked again at Danny’s Disability Living Allowance and now confirm that his entitlements are indefinite. Thank the Lord. It means that aspect of Danny’s future relationship with the welfare state is settled (at least, until some potential future government moves the goalposts again).
Strange looking back at school, and Oxford, and the ‘glittering prizes’ that were held out in those days. Strange contemplating the extraordinary success of some of my contemporaries. I was never going to be one of them, the OBE notwithstanding. Despite bonkers things like the press conference with Arsène Wenger and the visits to Downing Street or TV studios,1 I am basically the woman who sits here in the kitchen, having slept off the effects of three consecutive nights of small-hours stoma-bag changes for Danny, privately celebrating a letter from the DWP.
20 May 2013
All the time, all the time, I seem to be trying to wrestle with how we shore up a benevolent welfare state and cradle the vulnerable as if they were our own family. The vulnerable we always carry with us. We are the vulnerable, all of us, at some stage during our lives, and particularly as we decline, fade and die. And if not us, then our children and grandchildren, and if not them, then the families of people who clean our offices, process our sewage, grow our food. The people we brush past in the streets, the people we inadvertently cause to suffer thousands of miles away as a result of adverse trade conditions, tax evasion, weapons manufacture and sales. We are all in this together. We all affect one another. John Donne.
6 June 2013
When Danny was in his bath, he was happier and more joyful than any other nineteen-year-old you could possibly imagine. When he got out of the bath and let me wrap him in the towel, he laughed and chuckled in his unique Danny way, and I caught the thought in me, clear and certain: ‘Of all the possible other children I could have had, you are preferred to all of them.’
I had been reflecting on the issue of ‘procreative beneficence’, whereby, according to some philosophers, we are morally obliged to choose, of all potential children, the one who will have the best chance of the best life.2 These philosophers say that on the balance of probabilities and available data, being disabled predicts a lower quality of life than not being disabled. So one should not choose, if one has alternatives, the potentially disabled embryo.
But how can we know, really, of all our potential children, who will have the best chance of the best life, or even a decent chance of a good life? Of all the other possible children who might have emerged, I want only Danny. So what do they know, really, about what’s important, and what makes us who we are?
