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.

*

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…

14 thoughts on “Autism And Deprivation Of Liberty: the ethics of food

  1. Interesting ethical question, Liz. I don’t remember if you mentioned it, but the competence of an individual to make informed decisions is a very important factor. An individual must be capable of knowing consequences of decisions. Most people need assistance to eat in a healthy way. There wouldn’t be so many TV shows about good foods, bad foods, etc., if everyone knew what to do. For a person without understanding, it is important to have someone to give guidance. I’m not saying that the decision about what to eat should be the domain of the caregiver exclusively. To the extent that the person under care can participate, it is certainly worth while to make it a collaborative effort, as you mention in your post.
    Great post.
    j

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    • Hi Jack – thanks for reading and for your comment. We tend to use the word ‘capacity’ rather than ‘competence’ here but we refer to the same thing. I agree it’s crucial – Dylan needs guidance and at the moment it falls to me to lead on that (though not forever). The consequences of diet are pretty tricky to work out even if you’re not autistic – I am still reeling from the sugar revelations. I will be more sympathetic to those complaining about E numbers in future 🙂 BTW one of the photos in my post reveals just how inspired I have been by your blog: an avocado stone is visible behind the glass of water. I doubt I have the climate to produce another Arthur but at least he inspired me to try 🙂 L

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  2. It must be frustrating not to have an answer to Dylan’s behaviours but I find the account of your approach to solving it a great example of how not to jump to conclusions without a period of gathering evidence first.
    Yesterday, I found myself offering my own son a diagnosis of a health problem he had only just revealed to me – and in so doing I caused him more anxiety. Why did I do that, I thought afterwards? Misplaced protectiveness probably – certainly my own anxiety. He had consulted a doctor, so really I was just getting in the way of the proper process of diagnosis.
    The internet is part of the reason for my lay diagnosis and our access to instant information has really helped to provide us with a full set of possibilities of outcomes. However, patient and systematic exclusion of possible causes of illness is, I believe, the basis of the medical practice of diagnosis (perhaps why we end up as ‘patients’ in hospital?)
    My attempt to speed diagnosis up has not helped much and has, in fact, delivered another layer of anxiety for my son. Thanks for this post which in my mind clarifies the value of taking time as well as handling uncertainty constructively.

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    • Hi Caroline – oh that sounds tricky. I know that tendency though – have done it myself to myself and to others. As you say, the internet gives us access to information but orchestrating the information we should leave to the professionals I think. I attended a very useful meeting yesterday about Dylan, Chaired by a psychologist – it was so interesting to see her sort through and organise the information she was getting from myself and the professionals involved in D’s care. The information wasn’t new to me, but the way that the clinical professional approached making sense of it was. A very interesting, helpful and impressive process!

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