The Humber Bridge

humber5Before I had my own family I used to say that for every child I gave birth to I would adopt another. This seemed a small but realistic way of balancing the desire to have a biological child with the desperate need of already-born children for a family.

After Dylan was diagnosed I gave up my pledge; with an autistic child to care for, I told myself, it wouldn’t be fair and, anyway, I probably wouldn’t be approved to adopt. Later, other promises would be adjusted. I couldn’t, I realised, volunteer regularly or even for Crisis at Christmas; Dylan needed me and it wasn’t possible to undertake such commitments with him in tow. So I made donations to charity instead; I might not be able to give my time but I could at least do this.

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‘I’m thinking of volunteering’ I said to my daughter the other day. Just weeks since Dylan’s residential placement had been approved and already the idea had risen to the top of my newly-shuffled priority pack. ‘Good’, she said, ‘I’m glad to hear it’. My daughter understood the new imperative; not just my earlier idealism but the desire, now that Dylan is receiving help from society, to give something back.

I’m not sure the job I do has given me many useful skills but I’m hoping that I acquired some from my years supporting Dylan. At the moment I’m open-minded about what I might offer but am drawn to end-of-life care. The only thing I would rule out right now is autism. ‘I need a break ‘ I told my daughter. But it’s not just that. If I volunteered my time to autism I might as well be with Dylan. It has to be something different; a bit like a collective where you trade and exchange.

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humber bridgeI remember making the case for collective child rearing in an undergraduate seminar in the early 80s. I can’t imagine how we got on to the topic but perhaps the discussion arose from the study of a political thinker. Rousseau maybe or Dewey. I’m not sure. What I do remember, though, is that I was a lone voice that day. After arguing valiantly but without effect I turned to Dr Robinson and appealed for his support against my peers. But he wouldn’t give it; having children, he told me, was not motivated by a will to improve society but by the desire to perpetuate the self.

I understood this a little better once I’d had my own children. Perhaps having an autistic child added to my growing realisation that families are private entities, managing themselves according to their own value systems. An autism diagnosis forces us to confront aspects of our practice which might previously have run humdrum and unexamined. I found myself weighing the cost and benefit of every decision: whether to be relaxed about diet or intervene; how to manage meltdowns; when to use directive approaches and when to be non-directive. Sure there was professional advice for parents but ultimately the choices were my own; there is thus no less variation in how autistic children are raised than in that found across all families.

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For some parents the desire to raise a family without interference from the outside world is strong. I suspect there are different reasons for this: the parents whose own upbringing was so troubled they want to do things differently, their own way; or the mother who has so little power over her life she wants control of the way her children are raised at least. I once knew someone like this. I wasn’t close to him (he was the husband of a friend) so didn’t have a context for his parenting except that it was NYC in the early 90s. Every morning he would take the bus from their Central Park apartment and head downtown with the baby. Why is it, he asked me when I visited, that people think it’s OK to interfere in your life when you have a baby? A private man, he was not enjoying the way fatherhood had turned him into public property; strangers, he complained, would stop to talk at and even touch his son. These unsolicited approaches were a source of great irritation to him.

I remember him telling me how the baby had been crying one day while they were riding the bus. A woman seated behind started to dispense advice. He needed to take the baby out of the sling. He should give the baby a pacifier. That baby needed to get into a routine. Suddenly, he told me, he’d had enough. He took out a pad of paper and a pen and thrust them at the woman. Lady, would you write your name and telephone number down here for me ? Because the next time my son’s crying at 3am in the morning I’d like to call you up and ask your advice. He reported this with glee, happy he had found a way to tell this member of the public to butt out of his life.

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humber8To make a call for help at 3am in the night you have to be desperate and my friends were not – they were simply new parents dealing with the usual demands of a not-unusually unsettled baby. A desperate night is one when you are scraping poo off the walls yet again (I haven’t done that for years but will never forget when I had to, repeatedly). It is when you have lain next to your screaming child for five hours and they are still screaming. It is when you fall down the stairs because you are dog-tired from weeks of being up all night. It is when you drive 100 miles in darkness trying to settle your crying child. It is when you sit in the garden or barricade yourself in your room because you fear you will be hurt by your anxious son whose needs you have failed to understand well enough to help and who is in meltdown, a danger to you and to himself. It is when the house finally falls silent and you go to bed and cry yourself to sleep because you couldn’t be better or make a difference. It is when you stay up all night googling for answers or writing long letters, asking for help, which you know you will never send.

These are just some of the ways to become desperate in the night. There are others (some harder). I’ve heard parents of autistic children say that you only get help when you get desperate. I’ve said it too. It’s right, of course, that scarce resources should go to those in most need but it scares me (I mean it really did scare me) that the trigger for allocation is a crisis.

Some years ago Dylan and I went for a walk one summer with two autistic boys and their mothers. I had been invited by the woman whose child’s 12th birthday we were celebrating but didn’t know the other mother. Still, we talked the same easy language that parents of autistic children tend to when they are together. At some point we swapped stories about autism services within our Local Authority. They just don’t seem to hear, the mother I had just met complained. They don’t listen because they think I’m coping. But I can guarantee that if I go within 50 miles of the Humber Bridge they’ll listen.

We didn’t have to ask her to explain.

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humber4The Humber Bridge is a beautiful bridge over a wide river in the east of the county where I live. But in 2006 the way I would think and feel about that bridge changed forever when a mother and her autistic son climbed over the railings and down onto the underbelly of the bridge and jumped.

Alison Davies and her 12 year old son Ryan were caught on CCTV camera moments before they fell 100 feet to their deaths on Easter Day. The Humber is a tidal river with sands which shift so dramatically it has to be re-charted each week. In such conditions, finding Alison and Ryan was difficult. It was four days before Ryan’s body was discovered, upstream of the bridge, and it would be some time before his mother’s body was found. In the days after the tragedy, while the police waited for the river currents to surrender Alison, the media speculated on what had led her to the bridge.

CCTV footage had recorded the pair arriving, smiling, at Hull railway station in the morning. They no longer lived in the town but, we would learn later, it was a place where they had once been happy. There were reports of an interrupted 999 call having been made from Alison’s mobile phone moments before a camera on the bridge recorded them falling – not together but 8 seconds apart.

We will never really know what happened that day or why. The tragedy was, commentators agreed, a result of the strain Alison was under as a single mother of an autistic child (Ryan’s diagnosis was Fragile X Syndrome). The Independent reported that the closure of a parents group had represented a significant loss to Alison who had no other support mechanisms apart from limited help from her mother. A friend of Alison’s, also the carer of disabled children, said: “She just didn’t get the help she needed. You have to fight for everything when you are looking after children with disabilities because if you don’t fight for it, you don’t get it.”

And yet, it seemed, in the days before the tragedy Alison had been feeling quite positive. She had started a new job, passed her driving test and was tackling some DIY projects at home – challenging for anyone, never mind a single parent with caring responsibilities. The picture which emerges from neighbours is of a well-liked mother and son with an active and happy life. As the newspapers later reported, however, this was a veneer; Alison Davies was, in reality, struggling to care for her son.

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humber6Sadly there have been similar cases, often involving mothers who had appeared to be coping. I have listened to people express astonishment at such tragedies and suggest that had they only known they would have helped. I remember reading a request by one woman, in the aftermath of a similar case in America, that mothers bring their autistic children to her, rather than kill them, ‘in the middle of the night if need be’. 

So we are back to that call at 3am (the one my friend’s husband threatened the woman on the bus with). Such night calls may not be easy to receive but they are even harder to make in a society which does not encourage collective responsibility for parenting. And if you are a family in crisis there is a tipping point beyond which it becomes hard to even pick up a phone; holding on to any sense of your own agency, or a belief in the power of others to help, is difficult when you are at the bottom. In a note which Alison Davies left she referred to having failed as a mother and of the need to ‘end the pain’. She didn’t want her family to ‘have to worry any more’ about her and Ryan. ‘Clearly Alison was in distress’, a police investigator observed: ‘clearly she felt a burden and clearly she felt that she wanted to relieve her family of that burden’.

I recognise some of these feelings: doubting you will ever get the help you need; not wanting to ask for it; feeling helpless; wondering if your child might be better off without you; the impossibility of life alone. When you do your best and it doesn’t seem to make a positive difference to your child you can question whether there is anything anyone can do. You are the mother. You love your child more than anyone else in the world will. If you can’t help, who can? These feelings are natural and some may even be necessary. But if they combine in a particular way on a particularly bleak day or night, their impact can be devastating.

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humber3Later, in August, the coroner would refer to Alison Davies’ ‘life of despair’. Although she was struggling to cope with her son’s increasingly violent attacks, Alison was determined that Ryan should not be taken into care. ‘She loved Ryan so much and she tried so hard; her bank of resilience had been depleted ‘, her family said in a statement following the inquest. Alison was, they added, ‘a wonderful mother’.

It emerged that Alison had a history of depression and suicidal tendencies which made her and Ryan particularly vulnerable. Her family had intervened to help the mother and son on previous occasions. The call from Alison’s mobile phone had, apparently, been made 30 minutes before the tragedy but was not effectively followed-up. The inquest was told that Ryan was not pushed but jumped independently; it was noted however that Ryan had no understanding of danger and would have jumped, with encouragement, if told he could fly. The second person falling from the bridge was Alison. The coroner recorded a verdict of suicide on her and a verdict of unlawful killing on Ryan.

During media reporting of the tragedy and inquest there were frequent references to other such cases, no less tragic. The Guardian reported that the incident had led to calls ‘for more respite care for families with autistic members’. The Independent, meanwhile, quoted a National Autistic Society spokesperson as saying that: ‘if one good thing comes out of the tragedy it is an awareness of the lack of support for respite care. Local Authorities are reluctant to pay for support.’ Other newspapers reported sympathetic interviews with parents of autistic children, explaining some of the stresses of living with autism and the benefits of regular respite care.

I would hazard that every one of these tragic cases could have been averted had there been a timely response to the family’s need before they reached the tipping point. For an autistic child to be safe and to flourish, the family that provides care also needs to be well. Parenting an autistic child can become more challenging with adolescence and adulthood but instead of increasing with age, support falls away. Is it any wonder that parents are pushed to breaking point, especially if they have few support networks or are battling an existing mental health condition? I’m one of the lucky ones. I’ve got support. But I would be lying if I said that I’d never, sometimes, tried to think of places where Dylan and I had been happy.

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humber7In the US, where there have been similar cases, there has been much discussion in the press and much condemnation of the mothers on social media. I understand this response but worry that a backlash against individuals obscures the spotlight from shining, as I believe it must, on all of us. I am not questioning that Ryan was unlawfully killed. Nor am I suggesting that Alison’s actions could ever be justified or excused. I do believe, however, that we are all involved in these tragic deaths because, in a civilized society, caring for vulnerable children and adults is a responsibility we share.

While it is not natural or intuitive for us to adopt a collective approach to parenting, we need to be better at offering and receiving support. Alison Davies seems not to have found this easy – certainly she was reluctant to let others care for her son. And who can blame her? There are so many awful reports of care standards that it is hard for parents to trust their children to others. But instead of closing down specialist services because they have failed in the past, we should be improving them. If we put our energy into achieving excellence in the care system, with effective mechanisms for supporting families before they are in crisis (without creating a sense of failure or fear in parents that they are letting down their child) then we might help avert at least some of these tragedies.

The more individualistic a society, the less likely it is that the vulnerable will survive; certainly Dylan’s disability means he will only ever flourish in a society that prioritises social care. If we are to emphasise the importance of human flourishing, rather than human capital, we have to develop more cooperative and community-based approaches to supporting one another. With so much concern about our ability to meet the cost of an increasing care sector, developing sustainable models of support has to be a priority. I would hazard that those who receive support from others, offer it in return. Hopefully, as I adjust to no longer being a full time carer, my own life will bear this out.

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Disturbed by the tragic case of Alison and Ryan Davies, I kept news reports of these and similar stories determined that one day I would write something. I haven’t got around to the poem I thought I might write but let this stand, instead, as my small wreath. RIP.

Acknowledgements:

I have had these images of the Humber Bridge on my PC for years. I’m unsure of the sources now but hopefully they are from public domain sites such as Wikipedia.  In this post I refer to media cuttings of the incident (April 2006) and the inquest (August 2006) from The Independent, The Guardian, The Mail Online and the BBC.

Autism And Deprivation Of Liberty: the ethics of food

water68Dylan is in week four of his low sugar diet; the charts I’ve been keeping show the ‘challenging behaviour’ has dramatically reduced but not disappeared. The incidents that have occurred, however, have been severe. Such observations make decision-making hard: if the behaviours had vanished I would be making a noise about sugar and if there’d been no change I would be celebrating with shortbread. But here, in the greyscale world, things are less clear cut.

I cannot rule sugar out yet; it may be that on the days there were incidents Dylan had eaten sugar without me realising. I am still learning about the sugar content of products and have made some mistakes. My daughter pointed out that the flavoured Volvic water I’d bought for Dylan, for example, had a high sugar content. I was outraged; the product is marketed and sold as water. I read the labels of even the most unlikely products now.

Deprivation Of Liberty

water 007Clearly intervening in the diet of a 20 year old man raises ethical issues but, as I’ve noted previously, Dylan is capable of resisting dietary change; eating and drinking are activities which require Dylan’s consent at a basic level. Saying ‘No’ to Dylan’s request for certain foods, however, is Deprivation Of Liberty (DOL) and requires justification.

The first time I had to consider the implications of DOL was a year ago. Within a short time of Dylan starting at a day service after leaving school he had gained weight. I assumed this must be because he was less active than at school so I enrolled him in a gym. Collecting Dylan from his day service one evening, however, I found him clutching a handful of biscuits; it transpired that Dylan had access to a kitchen area and had been helping himself. As Dylan was an adult, I was told at a meeting to discuss my concerns, preventing him from doing this would be Deprivation Of Liberty.

Happily there was an outbreak of common sense; Dylan’s social worker confirmed that as his support plan included a reference to Dylan needing support to make healthy eating choices the day service should ensure he didn’t have free access to biscuits. Dylan’s adult schedule does, however, offer more opportunities for snacking than Dylan had previously. Whereas at school he had only a hot meal at lunchtime, Dylan’s timetable now includes a range of activities in the community which offer the possibility of a drink and snack. While this makes it harder to introduce the new diet it doesn’t alter the ethical dilemma; DOL requires as much justification for a single refusal as repeated denials.

Balance

water 011In last week’s post I mentioned a paper on the rights of people with developmental disabilities. The paper is pertinent as it focuses on the moral and legal implications of exercising control over someone’s life by curtailing their choices. The sub-title of the paper – the rights of people with developmental disabilities to eat too many doughnuts and take a nap – makes clear that food is a key arena for such dilemmas.

‘Biscuitgate’ (as I came to think of it) illustrates the need to identify areas where support with choice is needed. Learning to exercise impulse-control in relation to food and drink is something which can be addressed as part of a personal development programme; if goals are established within a care plan then reducing sugary snacks becomes something which is enabling rather than a deprivation of liberty. A care worker shared an example of this with me recently. A young man she supports becomes ill, apparently, after eating high fat foods; unfortunately his favourite brand of Cornish Pasty makes him particularly poorly. Because this young man is able to understand the link between certain foods and feeling ill he is able to make a choice; although he mostly avoids the triggers, every so often he has a pasty.

While we respect a person’s right to get sick, the right to personal liberty needs to be balanced against the need to protect others if this involves violent or anti-social behaviour. Dylan’s behaviour has put him in physical danger, made him vulnerable in the community and injured those caring for him. The incidents have impacted on Dylan’s life in terms of support levels, his access to the community and his leisure activities. If such behaviour is a consequence of eating sugar, isn’t this ground for depriving Dylan of the liberty to consume it? Plenty of people, however, become anti-social after drinking and we don’t deny them the right to drink: why should I have the right to remove sugar from Dylan’s diet?

Assumed consent

water 012The crux of the issue, I would argue, is capacity. While someone choosing to drink alcohol is aware of the possible negative as well as positive consequences of their actions, Dylan does not link his consumption of sugar with feeling angry. This is hardly surprising: I spent two months puzzling over the change in Dylan’s behaviour and only by chance stumbled on the potential link with sugar. The link is not intuitive partly because of the disconnect between the activity (eating sugar) and the behaviour (aggression). Even if I were to try and explain this in appropriate language (‘shortbread make Dylan cross and sad’) Dylan’s understanding of consequences is present-time; he knows that if he puts his hand in the candle flame it will burn but he doesn’t yet grasp cause and effect over time. As far as Dylan is concerned, ‘shortbread make Dylan happy and smiley’.

If Dylan is unable to make an informed choice, and if not making the choice puts Dylan or others at risk, I would argue that exercising control over Dylan’s diet does not deprive Dylan of liberty but rather ensures his safety and dignity. This does not, however, eliminate the need for consent; even though I have taken the decision on Dylan’s behalf I need his consent for it. But how?

The measures I am using are ‘soft’ observations of Dylan which include:

  • He seems to be enjoying his meals
  • He appears to be enjoying new practices (jugs of iced water for example)
  • He has introduced new routines (counting strawberries while preparing his pudding)
  • He has tried new foods
  • He hasn’t ‘asked’ for sugary products in the community or when visiting

These observations give the impression that Dylan is not only not hankering after sugar but is enjoying his new diet. Whatever the eventual verdict on the sugar trial, realising that Dylan is amenable to change and can be supported to make healthier choices in relation to food is a positive outcome. If it turns out that sugar is not implicated in Dylan’s behaviours then it can be reintroduced more healthily. Sometimes it can take a crisis to trigger modest change; making a molehill out of a mountain can be good.

Medical evidence

2014-09-02 09.28.49I’m not yet certain that Dylan’s aggressive behaviour is linked to his sugar consumption but have decided to continue with the diet at least for the moment. Such a common sense intervention may be OK as part of a trial but to justify it longer term I need more information; my charts are useful as far as they go but I want something clearer than greyscale.

Last week I asked the GP whether it would be possible to check for sugar-related issues by urine sample. Although not as good as a blood test it will, apparently, provide some information. Dylan had not given a urine sample before; not only would I have to deal with the issue of consent but with fundamental explanation. I spent days working on this. I played charades with the diamond-shaped pot the GP provided then left it in the bathroom. When it remained untouched I offered more active encouragement at bath time. Eventually, on the fifth day:  success. It occurred to me, during this process, that from Dylan’s perspective it must seem quite bizarre: after years of telling him to pee in the toilet suddenly I ask him to pee in a pot. I watched Dylan out of the corner of my eye as I decanted the sample into a specimen tube; there was a definite ‘she’s gone crazy’ look in his eye.

Later in the week I watched a documentary about London Zoo. Using classic Pavlovian methods the keepers were training some animals to accept basic medical observations. I watched fascinated as a gorilla, in exchange for a favourite food, allowed his keeper to listen to his heart through a stethoscope, check his basic functions and administer a needle. The gorilla was healthy but medical checks had been built into his care routine as a safeguard for the day when he might need them. What staff didn’t want, a keeper explained, was to have to have to use aggressive intervention with a sick animal; they preferred to build a partnership between animal and keeper based on trust (and fruit).

As I’ve suggested before in relation to medical procedures, if you are parenting a child who has a significant developmental disability then it’s probably a good idea to introduce a clinical environment as early as possible. When Dylan was young I was relieved that he was physically healthy and didn’t need to access medical services; now I wish I’d had more reason to take him. In an earlier post I reflected on the use of behaviourist strategies with autistic children; although generally uncomfortable with food rewards I noted that I had found them useful for specific tasks. Watching the zoo documentary I added ‘acceptance of medical procedures’ to my mental list. If I had my time again I would happily exchange sweets for blood and urine.

Celebrating quietly

water 013I gave Dylan a limited explanation about why I wanted him to pee in a pot and was careful not to talk about consequences. If something did show up in the tests, I thought to myself, it would raise a set of challenges which we didn’t need to face yet. Given Dylan’s resistance to medical treatment, saying ‘medicine’ at this stage would, I was sure, remove any possibility of getting a sample. I would deal with the consequences later. I’m not sure how useful the tests will be but I’m hoping they will at least inform a decision about Dylan’s diet. And even if they don’t, it feels good to have achieved another first: a urine sample may not sound like a big deal but for me it’s worthy of quiet celebration.

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Reference:

Bannerman, J.D., Sheldon, J.B., Sherman, J.A. and Harchik, A. E. (1990) ‘Balancing The Right To Habilitation With The Right To Personal Liberties:  The Rights Of People With Developmental Disabilities To Eat Too Many Doughnuts And Take A Nap’ in Journal of Applied Behaviour Analysis, Vol 23, No. 1, 79-89.

Images:

All photographs taken by Liz

UPDATE:  The urine sample was clear. ‘No action required’.  While I’m glad Dylan doesn’t need further investigations or treatment, part of me hoped for a clue to the changes in Dylan’s behaviour. The search continues…

Dietary And Medical Interventions In Autism

This week I continue with my focus on early intervention in autism, reflecting on the ‘treatments’ I tried with Dylan when he was newly-diagnosed (18 years ago) and asking what difference they made. In a previous post I noted that early intervention raises ethical issues because the autistic child is too young to consent to interventions. Furthermore, the non-verbal and learning disabled child may not be able to express his or her feelings about treatment, at least in a way which the parent understands. This makes for a challenging set of circumstances both for the parents, who want to do their best for their child and try interventions that might help, and for the child who is an un-consenting subject. In this post I look at some interventions which raise particularly significant issues for consent, including one where my experience was that Dylan stayed firmly in control.

Dietary Intervention

dietary 002Food is an area where some children (not just those on the autistic spectrum) may attempt to take control of their lives. Even a young child can exercise a degree of power in relation to food. While we may persist with attempts to encourage an autistic child to wear headphones or use a weighted blanket, even if he would rather not, we would not force feed him things which he refused to eat (except for in an extreme medical situation). Equally, it is very hard to withhold foods from a child or closely manage what is eaten. In this sense, then, there is scope for autistic children to sanction or resist dietary interventions planned by parents; this was certainly my experience with Dylan.

It is not my aim, here, to consider the wider issue of diet and autism but rather to reflect on the systematic adjustments I made to Dylan’s diet with the explicit purpose of reducing his autistic symptoms. I am not a scientist and the account which follows is the sense I made, as a parent, of the discussions about dietary intervention in autism at the time. As well as being parental meaning-making, my account is based on memory and is therefore reconstructed understanding. If I have misunderstood any of the processes I describe then I am happy to be corrected. I want to share this reflection, though, as I think it is important to consider the way in which parents make sense of scientific knowledge (even if this is flawed or incomplete) and build it into their practice.

The Flour

dietary 008In the 1990s there was much interest in biochemical explanations for autism. As well as concern about chemical additives in food there was speculation that the brains of autistic children might be ‘flooded’ with harmful substances from, for example, wheat-based products such as flour. Some autistic children, it was suggested, lacked the necessary enzymes to regulate these substances. For children who might be affected, a gluten-free diet (and, in some instances, a casein-free diet) was recommended. Such a child would typically exhibit symptoms of excessive tiredness, eye and skin problems, digestive disorder and behavioural characteristics such as lack of speech, failure to return eye gaze and lack of focus.

dietary 003During this time, Paul Shattock at the University of Sunderland was pioneering enzyme-testing and allergy screening which linked with concerns about bowel and other digestive disorders in autistic children. Andrew Wakefield, in London, was also researching bowel and digestive disorders in autistic children, specifically linked to the MMR vaccine. Because of Dylan’s medical history and the questions it raised about the possible ’cause’ of Dylan’s autism (which you can read about here) I had some contact with both programmes in the mid-90s. Dylan, however, did not particularly present with symptoms of bowel disorder or gluten intolerance; he was alert and clear-eyed with lots of energy and in apparently good physical health. Although I was willing to try dietary intervention, it was not therefore something I had a special commitment to.

Dylan was being raised within a vegetarian family. We ate local and organic produce whenever possible, avoided processed food, ate home-prepared meals and followed healthy eating guidelines. It was therefore frustrating that Dylan refused to eat the same meals as the rest of the family. Dylan seemed to be mainly interested in foods I would rather he didn’t eat. His diet was repetitive and bland, however, rather than outright unhealthy, and Dylan (who has always had a grand appetite) enjoyed it immensely. The implications of this proved significant when I attempted to intervene.

Macaroni Cheese

dietary 006I began with a gluten-free diet. The range wasn’t great in the 1990s. We were, at the time, at the beginning of the Macaroni Cheese Era (a phenomenon I’ll return to in a future piece about autism and diet). I therefore began by using corn instead of wheat pasta, optimistic that the familiarity of the cheese sauce would be enough to help Dylan make the switch. When Dylan refused to eat the corn pasta I decided to apply the maxim ‘in for a penny, in for a pound’ and took the plunge to casein-free as well, removing the cheese sauce. My introduction of a GF and CF diet thus meant the removal of macaroni cheese, as he knew it, from Dylan’s life.

It became clear that Dylan was not going to tolerate such intervention. He would not accept the substitute foods I offered. As I eliminated favourite foods from his diet, Dylan simply ate as much as he could of the items I’d allowed to remain. His diet became more and more restricted. Meal times became a source of stress. Trips and activities were spoiled by my anxiety that I might not be able to control Dylan’s diet outside the home. Food had always been a joyous part of Dylan’s life: he loved to eat and enjoyed the ritual of a family meal. With my dietary trial, I had taken away from Dylan the source of much happiness and removed from the family the most positive vehicle for social interaction in our life since diagnosis. Oh we were miserable.

The Flower

miscellaneous 006I was always as systematic as I could be with interventions, keeping logs of Dylan’s behavioural symptoms before, during and after the trial of any new initiative. I also trialled new initiatives for a minimum period before abandoning them. For many years, in a variety of contexts, I have used three weeks as a critical period for response to change. Three weeks to stop being a tourist and start being a visitor. Three weeks to stop smoking. Three weeks to win over (or lose) a class. Three weeks to get sick. Three weeks to know whether a new moisturiser is any good. Three weeks to decide whether I really like the colour grey on that wall. Three weeks to recover. And so I used this measure with Dylan. And here I must confess to being a failure against my own measures in respect of dietary intervention: I did not last three weeks.

There is a very powerful food lobby which is not specifically autism-related but which includes autistic spectrum conditions as an example of ‘problems’ caused by modern food production. The politics of food are complex and I understand and have sympathy with some a lot of the arguments made. When one of my blog posts was freshly pressed last year it received a lot of traffic and a number of comments from people outside the autism community who wanted to tell me that diet lay at the heart of my son’s autism and that I could ‘cure’ his autism if I addressed this. My blog post had nothing to do with diet or the causes of autism so I was interested in the number of people who, seeing a post from a mother of an autistic person, wanted to take the opportunity to explain to me that autism could be fixed through dietary adjustment. If they are right then perhaps, had I continued with the GF and CF trial, I could have mitigated (if not completely cured) Dylan’s autistic symptoms. Do I think he would have developed language had I done so? Or the learning disability Dylan presents with have been less? I doubt it. I might be wrong. I will have to live with that.

macaroni cheeseAs you can see from the photograph, Dylan is still partial to macaroni cheese. I made this flower the other week as a treat for him. It is made from wheat-based macaroni, organic full cream milk, butter and cheddar cheese. The flower’s petals are made from gluten-rich Pringles which Dylan loves and which I allow him occasionally (one tube a month). His face, when he walked in the dining room and saw the macaroni cheese flower I had made him, was wonderful; eyes dancing with utter joy and delight.

Medical Trials

Dietary adjustments can be one of the hardest things for a parent of a newly-diagnosed autistic child to undertake if, like Dylan, meal times are a source of pleasure and the child is physically healthy and eating a nutritionally adequate diet. The medical interventions I trialled with Dylan, however, pushed me to the limit of what I was prepared to do, given that my child was unable to give consent.

image via Amazon.co.uk

image via Amazon.co.uk

In a recent post about hospitalisation I referred to some of the difficulties I have experienced over the years when trying to support Dylan with medical treatment. In the early years following diagnosis, however, there were a number of medical approaches being pioneered with autistic children which I was determined to trial with Dylan. I remember endlessly creative attempts to disguise medication in Dylan’s food and drink (usually unsuccessful). The pestle and mortar was in constant service as was the jam pot. Less comfortable memories include my ex-husband and I administering liquid medicines to Dylan; one of us holding him on their knee while the other squirted medicine from a syringe into the side of his mouth then massaged it down his throat while he gagged. Not pleasant. Not something I ever want to have to repeat.

That ‘have to’ is important. The medical treatments I used with Dylan when he was young were either prescribed by his consultant or administered as part of research trials. Broadly speaking, the research trials were proactive and focused on the use of alternative therapies to help with symptoms of autism in general. Trials of prescription drugs, by contrast, were reactive and aimed at a specific behaviour (e.g. failure to sleep or lack of attention). Now, I would administer drugs to Dylan only if required in a medical emergency. I would not administer medication in order to support a trial of something which may or may not reduce autistic symptoms, nor would I administer drugs in order to ‘manage’ Dylan’s autism. This is a direct consequence of my experience of early medical intervention.

Choice and Control

image via commons.wikimedia.org

image via commons.wikimedia.org

During early childhood Dylan was prescribed Melatonin for sleep disturbance and Ritalin for hyper-activity and he took part in exploratory trials of Homeopathic and mega-vitamin therapy. My memories of these interventions are somewhat clouded by time but I do recall some details. I remember, for example, that I was very strict (to the point of obsession) about keeping charts of Dylan’s symptoms before, during and after medical trials. I remember, too, how shocked I was when I was told that Dylan had been in the placebo group for a double blind trial of homeopathic medicine conducted by a researcher at the local university. I had convinced myself that Dylan’s symptoms had improved. This was an important lesson to me; whether or not Dylan’s symptoms could be changed through medical intervention, it was certainly possible to change my attitude to them.

Later, Dylan’s consultant prescribed Ritalin as Dylan had presented as ‘positive’ on an ADHD diagnostic tool. There are lots of issues in relation to concentration and attention, for Dylan, across a range of contexts. The only times Dylan is still is when he is eating or travelling (he can sit for hours in a car or train). At all other times he is on the go. He paces backwards and forwards. He watches films on the move (I am working on sitting at the cinema at the moment). He cannot remain on an activity for longer than five minutes, typically. I don’t know how it feels for Dylan, but life for those supporting Dylan can be exhausting. Perhaps this is why, realising how tired I was, the consultant suggested I try Dylan on Ritalin.

dilski 001For me this was a significant moment. I know that for some children and adults Ritalin is very helpful. I also realise that it can be difficult to get the dose right and that it takes trial and error to adjust the prescription until it is working as it should. However, as with dietary intervention (which I should also note works well for some families although it wasn’t right for us), I found myself unable to persist with the trial of Ritalin. I have a vivid memory of Dylan sitting on the sofa, eyes glazed, as if he had been extinguished. I didn’t recognise my son anymore. I couldn’t find a flicker of recognition or light in his eyes. He had become a blank. I missed him bouncing around and pacing the room. I wanted him back, autism, exhaustion and all.

I began this series of posts by suggesting that four factors combine to influence early intervention in autism: the child; the parent; the dominant discourse about autism; and opportunity. Choosing to make dietary or medical interventions with newly-diagnosed autistic children should depend, I would suggest, on the individual child. While some children need the support of a managed diet or medication (for clinical reasons which may or may not be related to autism), for many children such interventions will be unnecessary and potentially a source of unhappiness and distress. I understand why it was important to me to try these approaches when Dylan was diagnosed; it was part of my quest for a miracle cure (even if I didn’t admit that at the time). However, it is not an approach I would recommend now for a child presenting as Dylan did.

The discourse around autism has changed in the time since Dylan was diagnosed. The shift from a medical to a social model of disability over the last decade has meant that society’s view of autism (in the UK) has undergone change and we are no longer focused on ‘fixing’ or reducing symptoms of autism.  As a result, there is perhaps less general interest in medical interventions now than there was 20 years ago. The interest in food and diet, however, would appear to be as strong as ever. It may well be the case that, given general concerns about food production, parental interest in possible links between diet and autism will continue. However, as I note in this post, the arena of food is one where the autistic child may well be able to exercise choice and take control.

Was Your Stay Planned Or An Emergency? Hospitalisation and autism

I hadn’t planned to write on this topic but my week took an unexpected turn. After developing symptoms of meningitis I was admitted to hospital for observations and to begin treatment in case the diagnosis was confirmed. Happily all the test results so far are clear. I feel much better and have been allowed home to care for Dylan while continuing treatment as an outpatient. Being in the hospital gave me space to reflect on the implications of medical emergency for autistic people and their carers and in this post I re-visit Dylan’s hospitalisations in order to draw out positive practices and challenges.

The Challenge of Medical Emergency

20140321_141307Was your stay planned or an emergency? the hospital administrator asked me last week. Emergency, I replied, remembering how one of my first reactions to being told to go to hospital was ‘thank goodness this is happening on respite night’. Getting sick if you’re a carer is problematic; it’s difficult to rest and hard to care. In a situation where you aren’t able to go on caring the best scenario for the person with a disability is that they can be somewhere familiar or that the emergency leaves their routine unchanged. Last week, therefore, part of me felt lucky.

Although the emergency focused on me rather than Dylan, he would have found the situation difficult had he been with me. Medical emergency is challenging for Dylan in two ways: firstly the unpredictability of the situation is problematic and secondly Dylan is uncomfortable in clinical environments. I don’t think this is specific to autism, necessarily; there are plenty of non-autistic people with medical phobias and some who avoid going to hospitals even to visit. There are also lots of people who dislike specific medical procedures, such as needles, and some who avoid all interventions including drugs. Why should I be surprised if Dylan has similar reactions? There may, however, be specific features of the medical environment which explain Dylan’s discomfort. Furthermore, while non-autistic people may manage their anxieties by avoiding medical treatment, providing this opportunity to an autistic child or adult with a learning disability raises ethical issues and requires judgement and courage.

Reassurance and Support

Since his hospitalisation for meningitis as a baby (which you can read about here) Dylan has received treatment for medical emergencies three times. On one occasion, when Dylan was 13, this was due to illness. Dylan presented with symptoms which in another child may not have given cause for alarm. Had it been my daughter, for example, I would have been able to ask her how she felt and make judgements about the seriousness of her condition on the basis of her responses. With a child who is ‘non-verbal’ and has a learning disability, however, this is not an option. It is only in the last few months that Dylan has learned the word ‘sick’ and connected it with his ‘tummy’, and even now I’m not convinced he is applying it to illness (I suspect he might be using it as a word for hungry).

Throughout Dylan’s childhood I have had to rely on observational data when making judgements about his health. In this situation I have sometimes wanted reassurance from doctors that my non-professional judgement was OK. So when, on this occasion, Dylan collapsed and briefly lost consciousness I decided to get him to the hospital. This is an example of me accessing medical services for support; although being at the hospital made no difference to Dylan’s care (he wouldn’t accept any intervention) I found being there helpful. Carers of learning disabled and non-verbal children may sometimes need this sort of reassurance and support from medical professionals.

Blue Glass

The other two occasions when Dylan was hospitalised were due to accident rather than illness and both times were a consequence of him having ingested non-edible substances. These incidents are linked to Dylan’s disability in that ‘pica’ (eating non-food items) is something which some autistic people demonstrate. Dylan likes to mouth, chew and sometimes swallow a range of substances including paper, cardboard, plastic and glass. Because this is something which is known about Dylan, these incidents could be regarded as arising from lack of supervision, though the reality of caring for someone with high levels of need is that accidents can still happen.

At the time of the first incident Dylan was seven years old. It was shortly after Christmas and I’d taken care to supervise Dylan around the tree. When I took the tree down, however, I decided that I didn’t want to put away a blue glass icicle. I’d been enjoying it on the tree and thought it un-Christmassy enough to hang permanently in the bay window. So that is what I did, without considering that it might be a hazard. Later that week I walked into the living room to find Dylan sitting on the sofa munching his way through the icicle having climbed up to reach it down from the bay. It was mostly already eaten; just the bulbous globe of the bottom of it posing more of a challenge to Dylan’s chomping. I remember the measured panic I felt, battling to stay calm and deal with the situation while feeling complete horror that my child had eaten glass. Even at this point I was aware of a voice in my head telling me that however bad I thought the situation, it would get worse; although this was the first emergency since Dylan’s autism diagnosis I knew he wouldn’t tolerate any medical intervention.

Letting Dylan Decide

20140322_143331I knew this because Dylan had consistently resisted all health procedures and treatments; since his autism diagnosis I hadn’t been able to administer a single dose of Calpol, take his temperature, put on sticking plaster or apply cream. Dylan would not drink or eat anything in which powders or other medicines had been concealed, even if they were (allegedly) colourless, odourless and tasteless. Various attempts at medical observations had been made during visits to clinic. We sometimes managed to weigh and measure Dylan but were never able to approach him with a needle (to take blood). An attempt to conduct an ECG when Dylan was experiencing ‘absences’ failed due to his refusal to wear the cap and clips. Determined to involve Dylan in trials of medical and alternative remedies I had persisted with the administration of some tablets and liquids by syringe. While this was occasionally successful I had stopped these by the time of the blue glass incident, judging the distress it caused not worth the promised benefit.

As noted previously, resistance to medical treatment is not the exclusive domain of autistic children. My daughter, for example, had a terror of needles. The practice at the Steiner Kindergarten she attended was that the children moved onto sewing having completed a pom-pom. These crafts were linked to key stages in child development and intended to support specific gross and fine motor skills as well as corresponding with socio-emotional maturity. The Kindergarten leader and myself were baffled when my daughter refused to move onto sewing with the rest of her peers, preferring to begin another pom-pom. Many weeks later, weary with winding wool around the enormous circles of card we had given her, my daughter explained that she didn’t want to move onto sewing in case she accidentally pricked her finger. She didn’t want to fall asleep she told me – she really didn’t want to fall asleep for all that time.

If the story of Sleeping Beauty should affect my daughter so powerfully, how much more might this be the case for my autistic son? I have written elsewhere about the extent to which Dylan appears to learn from Disney and it’s possible that this may be the source of his fear of needles. Whatever the reason, Dylan had determined his own relationship with the health service which was that there would be no medical treatment or intervention. The blue glass incident was important in that it was the first time his preference was going to have to be challenged; my child had eaten glass and doing nothing was not an option.

Look But Don’t Touch

As predicted Dylan did not allow the hospital doctors to make any medical observations following the incident; they couldn’t take blood samples, monitor blood pressure or temperature or examine him physically. The only observations which proved possible were visual. Clearly this is challenging for a hospital environment where protocols involve taking basic observations of patients. However, I have always found staff to be understanding and flexible when treating Dylan. A positive outcome of the blue glass incident was that we discovered Dylan was prepared to accept other procedures that didn’t involve touch, such as x-ray.

This reminds me, again, of the importance of sensory experience to Dylan. In the absence of linguistic or cognitive supports to understanding, Dylan was using his emotional and sensory intelligence. For him this meant resisting physical contact, perhaps in order to maintain his boundaries. This makes sense to me in the context of pain and anxiety when it is natural to withdraw and to defend your physical space and self.

The x-ray pictures showed the slivers of icicle in Dylan’s digestive system but these were not felt to be cause for concern; he had not cut his mouth on the glass and the pieces he had swallowed would pass through his system without risk of blockage. Dylan tolerating the x-rays had an unexpected benefit too; they revealed something of more concern to the doctors than the Christmas decoration. Dylan, apparently, was chronically constipated. From a medical emergency, then, an opportunity emerged to monitor Dylan’s health more generally. It didn’t make a difference to Dylan in that he detected and rejected laxative powders wherever I hid them. However, it raised our awareness of Dylan’s digestive system and prompted increased efforts to vary Dylan’s diet.

Bean Bags

I had stopped worrying about Dylan’s bowels when one day (when he was around twelve years old) I was shocked to discover enormous ‘flowers’ in the toilet. The blossom-like structures filled the whole bowl. Stunned, I telephoned the respite provision from which Dylan had just returned. They had also found the toilet flowers and had traced these to another young person. The source of the flowers were the bean bags in the lounge; Dylan and the other child had found a way to remove the polystyrene balls from the inner bag and had consumed some of them. They had passed through the digestive system easily enough but were unflushable and had absorbed water to produce these huge flowers.

Although it was reassuring that the balls had passed through it was obviously not something we wanted to happen again. This became a frustration throughout Dylan’s teenage years. Periodically I would find polystyrene balls in Dylan’s pockets and remind the school and respite provider of the risk to Dylan. However, when Dylan was 18 he came home from school one day strangely quiet. In his home-school book a member of staff (not realising the implications) had described how Dylan had emptied polystyrene balls from a bean bag. I had barely had chance to check Dylan’s pockets before he started vomiting.

Dylan had to go to adult A&E this time. Once again I was impressed by the adjustments made for Dylan which included bringing Dylan forward in the queue, allocating us a private room and not attempting to make observations which Dylan didn’t want (temperature, blood pressure etc). The other thing which staff realised was that it was better if they could support me to do the nursing as I was Dylan’s trusted adult; they explained what I needed to do and supported me with his care through the night.

Duty of Care

20140321_080046

Tired and Anxious on the Equinox

The bean bag incident was more serious than the blue glass. Dylan had consumed large quantities of polystyrene balls which meant there was a risk of blockage. If this were the case, the situation might require surgical intervention. I knew that my duty of care to Dylan meant that if this was what was needed medically, I would have to over-ride his preference for zero intervention. No parent would want to be in this situation. My relationship with Dylan is built on trust and advocacy – being put in a position where I might have to break that trust or act against his will (even if this is necessary or in his best interest) is distressing. Fortunately on this occasion Dylan was again amenable to x-rays and on the basis of these the doctor was happy not to operate. While the medical intervention which Dylan will tolerate is minimal, so far it has proved to be enough.

Last week in the hospital my main worry was what the implications for Dylan might be if my tests for meningitis came back positive. That fear has receded now, but on Thursday night I lay awake turning over in my head how the doctors could offer Dylan prophylactic treatment without using a needle. Was there a penicillin-based cream, I wondered, which I could persuade him to rub on his body? Might he accept an oral dose perhaps? Only recently, and out of the blue, Dylan had pointed at the medicine cupboard and said ‘Po Dy-an, meh’. Stunned, I had opened the cupboard and offered him a spoonful of cough medicine which, after a bit of hesitation, he swallowed. Last week I clung to the memory of that 5ml hoping it might prove timely paving for penicillin if required.

Turning Emergency To Opportunity

Dylan relaxing in the Hospital

Dylan relaxing in the Hospital

It’s likely that there will come a time when Dylan needs medical treatment which goes beyond the visual investigations he currently tolerates. It’s also possible that at some point I may have to support him through an intervention which he requires but doesn’t want. It’s not easy to prepare for these scenarios. This week, however, I have tried to capitalise on events by involving Dylan in my out-patient appointments. Dylan has watched the nurses insert and remove butterfly needles in my arm and has talked to me about the ‘meh’ making me better. I have taught him the signs for injection and medicine. The nurses have given Dylan a positive experience of the hospital environment and procedures; he is fascinated by the idea that there are beds in the building and by the variety of medical equipment. Dylan has enjoyed our visits and more progress has been made to lessen his anxiety about the medical environment in the last week than ever before. Hopefully, in this way, I have turned an emergency into an opportunity.

We usually access medical services in a non-routine and unpredictable way. An emergency situation is not a good learning environment and it would be surprising if autistic children and adults developed positive feelings and confidence from such a context. Perhaps there is more we could be doing, on a routine basis, to support children and adults like Dylan to access medical care. In writing this post I have been struck by the following issues specifically:

  • the medical environment may present sensory-based challenges for some autistic people
  • medical investigations tend to be touch-based which some autistic people may find difficult
  • knowledge of medical procedures may be based on learning from fictional sources (such as film) and a potential source of anxiety
  • where zero or minimal intervention is a preferred option carers need support from professionals to achieve this
  • where treatment is required the relationship between carer and autistic person may face specific challenges
  • carers get sick too!

Thank you for reading
I wish you emergency-free days!