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…

50 Shades Of Beige

macaroni cheeseIn a previous post I reflected that I didn’t pursue dietary intervention with Dylan when he was young because his autism did not appear to be exacerbated by food intolerance. I did try to intervene on more general health grounds but when this proved unsuccessful I resigned myself to Dylan’s diet being less than perfect. As a food-aware vegetarian this was an aspect of parenting an autistic child I found hard to accept; I learned to tolerate Dylan’s food choices, however, by trying to understand them.

50 shades of beige

baguettes| crumpets| English muffins| Belgian waffles| Scotch pancakes| brioche| croissants| pop tarts| cornflakes| white wraps| white rolls| milk| butter| white cheddar cheese| edam cheese| Dairylea slices| fromage frais| yoghurt| potatoes| bananas| apples| cheese pasties| macaroni cheese| spaghetti| tortelloni | cheese sauce| cheese pizza| cheesy potato cakes| cheese pancakes| quorn nuggets| chips| veggie fingers| vegetarian kievs| vegetarian schnitzels| vegetarian meat balls| vegetarian sausages| Yorkshire puddings| vegetarian escalopes| Pringles| quavers| mini cheddars| angel cake| fondant fancies| donuts| syrup| ice cream| gingerbread men| millionaires shortbread| cookies| white chocolate|

Food and the senses

Brid and Food 065Again and again, when trying to understand Dylan’s world, I return to the senses. What distinguishes Dylan’s foods is that they are largely colour-free, flavour-free and odourless. I use the term ‘beige’ to describe that neutral range of shades from pale straw through to caramel. Some of the more adventurous foods in Dylan’s list throw in a pastel: the pale yellow of a banana, a light green apple or the pink and lemon of angel cake. Essentially, however, Dylan’s meals are beige.

I photograph Dylan’s meals so that I can offer him food choices and it was through this I noticed the colours tend to be neutral. Fresh pasta would be ruined for Dylan by the addition of sauce: with one exception it must be served plain with a sprinkling of grated cheese. Pizza must be unadorned with no tomato sauce visible through the uncoloured cheese. Main course selections can be accompanied by Dylan’s one beige vegetable, served one way (chips).

Although Dylan wouldn’t dream of eating highly-spiced or smelly food he is fascinated by it. One of his few clear words is ‘marmite’; he frequently fetches the marmite pot from the kitchen and walks around with it, pretending to smell then saying ‘phewee’ while waving his hand across his nose. If I offer him a jar or bottle to sniff he will gingerly approach it, simultaneously intrigued and repelled. But eat or drink it he will not – and his taste buds are so finally tuned he can detect rogue substances instantly.

There are some surprises on the list though. Pesto for example. True Dylan picks out every single pine kernel, but the colour, smell and taste are for some reason perfectly acceptable. Building on this I have introduced mozzarella and pesto escalopes in a quorn range Dylan likes and have recently offered spinach and ricotta tortelloni; I figured Dylan might mistake the green stuffing for pesto (he is suspicious I think, but has eaten it a couple of times). I also like to give Dylan veggie fingers because I can sneak tiny pieces of carrot and pea past him (the only time Dylan’s vegetable-detecting radar seems not to work). The least bland food in the list is probably vegetarian kievs; these are a relatively recent addition to Dylan’s diet and give me hope that he may accept a wider range of tastes and smells eventually.

I am happy to support the aspects of Dylan’s diet which are linked to his sensory needs; I wouldn’t want to serve him foods which cause distress because of the way they smell, taste, look or feel. While this means Dylan’s diet is bland and repetitive, if he enjoys it and is basically healthy I don’t object. Dylan has developed strategies for selecting foods which meet his requirements for low sensory arousal.There is a kosher range at one supermarket, for example, which Dylan trusts.  If food producers try to excite and delight our taste buds, however, Dylan withdraws his custom; when Linda McCartney changed the sausage seasoning Dylan avoided other products in the range which had previously been his favourite.

Sugar and spice

needsweets.co.ukAlthough I fed Dylan a wide range of pureed fruits and vegetables as a baby he has not eaten a vegetable since (except for potatoes and the fragments of pea and carrot in veggie fingers). I assume his aversion to them is partly about colour. Dylan will, however, tolerate some bright fruits: strawberries, cherries, plums and grapes are now acceptable. I have wondered whether Dylan’s liking for these is linked to his love of sweets: they have acquired the status of honorary Haribos, perhaps. Because I should note that, in addition to the 50 beige foods, Dylan eats brightly coloured jelly-type and candy sweets if I let him.

As I have noted in an earlier post I am careful about Dylan’s intake of sweets; although they can be an effective reward as part of a behaviour training programme I am uncomfortable with their use. Given Dylan’s restricted diet I have felt a particular need to limit Dylan’s sugar intake; while I might not insist he eats the foods he has an aversion to, I can at least restrict unhealthy items he is unhealthily predisposed to. This was easier when Dylan was younger and I had more responsibility for his diet and food choices than I do now he is an adult. In the last couple of weeks this has become a potentially significant issue.

If you follow our blog you will know that Dylan has developed behaviours recently that have been causing concern. I have been keeping charts logging incidents but have struggled to find a pattern to the behaviours. Then, a couple of weeks ago, a woman who hadn’t met Dylan before came to assess him. I shared Dylan’s charts; she was interested and emailed later to say she had been racking her brain for possible answers. I might want to look more closely at food, she said – had I noticed that events often took place around meal times. Could Dylan be suffering from reflux? Feeling sick? Could he be diabetic perhaps? Had I considered spicy food? Or sugar perhaps?

milky bar wikipediaBecause the changes in Dylan’s behaviour had been so dramatic I had been looking for something in his life that had changed; now I was faced with the possibility that the behaviours were linked to something that had remained the same. That night I stayed up researching food intolerance and aggressive behaviour; a suggestion that cropped up again and again was sugar and, more specifically, white chocolate. White chocolate is Dylan’s favourite treat. He always picks a white chocolate egg at Easter. When we shop he chooses a milky bar. He selects white chocolate chip for the cookie tin. People who know Dylan give him white chocolate for a present. This had always seemed fairly innocuous to me.

The milky bar kid is strong and tough, and only the best is good enough
the creamiest milk, the whitest bar, the good taste that’s in MILKYBAR!

When I looked back through Dylan’s behaviour chart I found details which lent support to the sugar hypothesis: the day Dylan had a major incident coming down the valley he had bought an ice cream on the way up; a terrible attack one Sunday evening happened 40 minutes after Dylan had eaten a half bag of white buttons. I decided this was worth pursuing and moved Dylan on to a low sugar diet: no chocolate, biscuits, cakes, ice cream or soft drinks. Since making this change to Dylan’s diet there have been just two incidents compared to the previous pattern of almost daily incidents. Although I don’t think diet is a complete explanation for Dylan’s behaviour, I am persuaded that it could be part of it.

foodxAt the moment I’m reading Caroline Knapp’s Drinking: A Love Story, a memoir about getting sober. The book has encouraged me to reflect on my decision to give up drinking six years ago (which you can read about here). Giving up sugar, it occurred to me, could be as hard for Dylan as giving up drinking was for me. I know the situation is different in that a decision has been made for rather than by Dylan but I have his long term interests at heart and hopefully some understanding of his short term struggle. To help Dylan through the difficult early days I have been sugar-free too; how could I eat an ice cream while saying ‘No’ to Dylan?  Whatever the long term outcome of this trial, the shade of beige looks considerably less innocuous to me now.

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Reference:
Caroline Knapp (1996) Drinking:  a love story. Dial Press

Images:
All photographs taken by Liz except for the milky bar image which is via wikipedia and the strawberry haribo image which is via needsweets.co.uk

Ways Of Seeing: sepia, rose, 3D or lens-free?

The recent developments in Dylan’s behaviour are so puzzling they seem to need left field answers. I pore over the incident log searching for a pattern. When I can’t find one I turn it around and look again; it must be here somewhere, I tell myself, I just can’t see it. I share the log with others – maybe they will see something I’m missing.

August 2014 056Living with autism is a bit like being a detective. Usually I enjoy this; stumbling across the unexpected or finding a missing piece of puzzle is satisfying. Perhaps this time I’m looking too hard or in the wrong places: if there isn’t an obvious explanation I’m probably not going to find a cryptic solution in a log. Maybe I just need to stay watchful so I don’t miss the clues when they come.

My records, for example, could be part of the problem. Perhaps I can’t find a pattern not because of the way I’m looking at the log but because of the way I’m seeing the behaviour. Parenting Dylan, I’ve suggested before, is like ethnography; to understand his world I’ve had to walk in his shoes and look with his eyes. If I can’t make sense of Dylan’s behaviour then maybe I need a different way of seeing – otherwise, I might not stand a chance of that flash of light from the left hand side.

roseMy friend Jack, who blogs about being the sibling of an autistic man (among other things), can turn a cliché on its head. We view the past, he says, through sepia spectacles; it is the future we see through rose-coloured glass. Such optimism. Parents of autistic children can feel deep anxiety about the future but I suspect many of us bury it. I don’t know whether I have become a more positive person through Dylan’s autism or whether I was always an optimist but these days I wear prescription rose. They’re good up close, I think, but not so great at a distance. Perhaps that’s part of the problem: could my present-time focus be preventing a long-view of Dylan’s needs?

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Canal day 009Here’s Dylan with our friends Julie and Ella earlier this year; we’d been to Cineworld to see Tarzan. Ella is a seasoned cinema-goer but for Dylan this is still a relatively-new experience. I have worked hard over the last few years to support Dylan to access the cinema; we started with Autism-Friendly screenings and after a while were able to attend selected mainstream films. On this occasion Julie and I had planned to take Ella and Dylan to the cinema at the end of a canal walk; we would be tired and this would be a good way to end the day.

Canal day 006As it was hard to judge timings we would have to choose the film on arrival; not a problem at a cinema complex where there would be multiple screenings of children’s films. The first suitable film, however, turned out to be a 3D screening. Dylan hadn’t been to a 3D film before. I don’t think he’ll wear the glasses I said to Julie. As the glasses came in sealed bags we couldn’t try them before buying tickets. If Dylan wouldn’t wear the glasses, the man at the desk advised, he wouldn’t be able to enjoy the film; without them it would look blurry. The next regular screening was not for another hour; Dylan wouldn’t wait that long so, armed with pick ‘n’ mix and specs, we went in.

Canal day 010All appeared to be going well. I explained to Dylan about the glasses. I photographed him in them. He seemed pretty chilled. I turned to Julie; when I looked back Dylan had removed the lenses from his specs. Julie and I tried every which way but could not get those lens back into the frames. It was frustrating for me to have paid for glasses that hadn’t lasted to the start of the film but it would be even more frustrating for Dylan once the film started…

In the event we managed; Julie and I shared, sacrificing Tarzan’s outlines so that Dylan could experience him in 3D. Dylan seemed to prefer his lens-free glasses: he wore them as we left the cinema and, as I remember, kept them on in the restaurant afterwards. I think he looks rather handsome; the frames suit him. Julie pointed out it was actually a sensible thing for Dylan to have done: You gave him some glasses he couldn’t see through. He wanted to see so he took the lenses out.

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August 2014 067 I have two pairs of glasses (as well as my rose spectacles) which I alternate between. My optician tells me that bifocals are inevitable at some point. This has happened recently and fairly rapidly; I’ve not had to think about my own eyesight much before now. I did, however, have to spend time at the eye hospital when my daughter was young.

verywellbeing.co.ukShe had a squint or ‘lazy eye’; her father noticed it when she was only three years old (for some reason I could never see it) so it was picked up relatively early. Before a treatment path could be decided upon the doctors needed to undertake a comprehensive assessment of my daughter’s eyes including standard sight testing. This wouldn’t be possible, I told the optometrist. Her eyebrow raised. I could see ‘problem mother’ written across her face. Well we’ll just have a go shall we, she said. But my daughter, I explained, wouldn’t be able to complete the test because she didn’t know the alphabet: she won’t be able to tell you what she can see, I said.

My daughter was at a Steiner kindergarten and in line with Steiner philosophy my husband and I had made a decision not to introduce formal learning until she was seven. My daughter would not therefore be able to name the letters on the sight chart even if she could see them. The assessments were re-scheduled and in due course full measures obtained. I sometimes wondered whether the delay in gathering this data altered the course of treatment; although there had been talk of surgery my daughter controlled the squint and there was no intervention.

Dylan’s sight and hearing have never been assessed and, given the way measurements are taken, it is unlikely that they could be; for all I know Dylan may be short- or long-sighted. Medical tests and examinations require more than the informed consent of the patient (challenging as that can be); they usually require language and sometimes literacy. My daughter’s inability to report what she could see because she wasn’t yet literate was temporary; not completing the eye test did not have major implications for her health (and may even have helped given that it delayed intervention). For someone like Dylan, however, who is neither literate or verbal, the challenge posed by the need for medical examination is significant.

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trance2Dylan has now been referred for neurological and psychological assessment; while the changes in his behaviour may be functional and an attempt to communicate, there is a possibility that Dylan is having seizures. Before Dylan is able to access specialist services, however, he needs to have had a full medical examination to rule out other possible causes. Dylan may, for example, have a persistent ear infection or chronic disturbance in his ear; this could explain why Dylan grabs at ears during an episode. Equally, Dylan may be experiencing headaches or some other underlying problem; the nose bleeds which Dylan has always been prone to have increased in frequency and duration in recent weeks.

Getting Dylan to accept a medical examination is, however, another matter; he refuses to allow our family doctor to carry out even the most perfunctory of observations. I have made previous reference to Dylan’s refusal to consent to medical intervention here and here. Apart from a couple of emergency situations this has never posed a problem in that Dylan has always been healthy.

Recent developments have, however, put Dylan in a difficult position in relation to medical services. The possibility that his distress may be due to an undiagnosed medical condition is troubling; Dylan does not understand that ‘medicine’ is a good thing and can make you better and he cannot therefore make an informed decision to accept or reject it. I act in his best interests. At what point might that involve over-ruling Dylan’s resistance? And what exactly might that involve?

In a previous post I have argued that we cannot leave autistic children until they are adults to encounter medical services. By then they may, like Dylan, be resistant to something which is unfamiliar and feels threatening. While Dylan was growing up I helped him to establish boundaries in relation to his own body; how does he square medical examination with my insistence that he shouldn’t remove clothing in front of strangers or let anyone touch him? I realise, now, that this lesson needs qualification.

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dentist1I once read that the development which has contributed most to human happiness is dental care; before advances in dentistry, apparently, toothache was responsible for great misery. Happily Dylan (as far as I know) does not suffer from toothache; Mr Jones the dentist has worked patiently to support Dylan through ‘rides on the chair’ to the full examinations he now receives regularly. I have no idea whether this would help if Dylan ever needed any work doing but it would, presumably, assist with diagnosis.

Surely we could apply the model of regular dental check-ups to general health care for autistic children? Regular contact with professionals and equipment (stethoscopes, thermometers, BP monitors etc) when Dylan was young could have helped prepare him to accept the basic medical observations he is so in need of now. If you are a parent of a young autistic child, you might want to lobby your education provider to incorporate such a programme. Alternatively, you could take your well child for regular check-ups with your family doctor; one day you may be glad you did 🙂

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All images taken by Liz except for the rose-coloured spectacles (huffingtonpost.co.uk) and the sight test chart (verywellbeing.co.uk).

‘Challenging Behaviour’: the elephant in my room

Kent August 2012 158 The word ‘blog’ derives from the phrase ‘web log’ which suggests an online diary. In this sense I’m perhaps not a real blogger; while my posts sometimes include background information about on-going aspects of Dylan’s care, I tend to foreground reflection rather than diary information. Last week, however, this proved challenging: I had planned to reflect on accessing short break provision but was overtaken by real-time events when Dylan’s short break provision broke down while I was writing the post.

How to maintain a reflective voice when you’re in the thick of it? The material which I thought was illustrative background (i.e. Dylan’s experience) wanted to move centre stage into the foreground. I tried to maintain my reflective distance last week but it meant there was a bit of an elephant in the room.

Stock take

If you have been following this blog you’ll know that I’ve been battling with the funding and policy environment on Dylan’s behalf this year. In England, currently, autistic adults may be eligible for support from one or more of education, social care and continuing health care budgets. There are, however, a number of problems (at least in my Local Authority) with making information about these systems available to families.

All school leavers with a statement of Special Education Need (SEN) for a learning disability are entitled to continuing education. In the very near future I will focus a blog post on this because it has significant implications [I have since done this: you can read about it here]. It is my contention that Local Authorities are currently failing in their statutory duty to provide this, particularly to people who present with high or complex needs. Dylan was not offered any education when he left school last summer and much of my effort in the last year has been directed at lobbying for the development of appropriate local provision. Social care and continuing health care funding may also be available for young autistic adults depending on level of need (determined by assessment) and I’ve also been pursuing these over the last year.

In a recent post I compared these three funding streams to a three-legged stool. In Dylan’s case, the stool was broken: nine months after leaving school he still did not have access to the education provision to which he was entitled; his continuing health care needs had not been assessed; and his interim social care payments (from which I was paying for a day care centre and one overnight break a week) had stopped without warning or explanation. I had been living in a place of quiet despair about Dylan’s care all year but in April I wondered how much longer we could keep going.

An update

DSCF1340At the end of last month Dylan’s social care payments were reinstated (after repeated phone calls, emails and a letter to Nick Clegg, my MP) on an interim basis until the end of August. Although this is only temporary funding it is a huge relief; without it Dylan would not have been able to access any day care or short break provision over the summer.

This meant that I could focus on developing a more permanent plan for Dylan from September (which you can read more about here). The assumption, over the last year, is that this would need to involve a combination of education and social care. Progress with the development of appropriate education in the city is, however, slow and out of my hands. Will it be ready in time? I asked the man from the council couple of weeks ago. Yes, he reassured me; something would be available for Dylan after the summer. But how will I know it will be appropriate I asked if it doesn’t exist yet? Oh it will be, he said. This will all unravel in September, I thought to myself. I had no choice, however, but to plan on a promise. Or so it seemed. But then last week (o halleluiah!) I heard that Dylan had been approved for continuing health care funding. Hopefully I am near the end of my long journey to secure appropriate support for Dylan as an adult.

The Elephant

DSCF1341This is breaking news; I hadn’t heard that Dylan had been approved for health care funding when I wrote about short break provision in my last post. The news about Dylan’s funding may alter the approach to short breaks I take in the future but the current crisis (i.e. the one which emerged last week) is about providers rather than funding.

I was so concerned to stay focused on the long view of short break provision last week that I dodged the current crisis a bit, or rather told myself that I wasn’t yet in a position to reflect. But the situation is this: the short break providers have decided that they aren’t able to accommodate Dylan any longer given his needs. Dylan’s short breaks were located in a small residential house which wasn’t a suitable environment, particularly given the profile of other service users and staff capacity. As I noted in last week’s post I was sceptical from the outset about the suitability of the provision.

Needs change and sometimes in a way that requires more not less support; the reality is that placements can and often do break down. I’m glad that Dylan’s short break provider was supportive and sensitive throughout: they communicated honestly; never criticised Dylan; focused only on their capacity to support; and responded to my request for emergency cover for this weekend so I can fulfil a long-standing engagement.

I can still see an elephant

Kent August 2012 163But why did the placement break down? Well it’s jumping. That doesn’t sound very challenging I know but actually it is. I’ve written a bit about Dylan’s tendency to jump here as part of a review of Naoki Higashida’s The Reason I Jump. If only Dylan’s reasons were the same. I don’t think they are but I don’t really know what does cause Dylan to jump. I’m baffled. [I have subsequently reflected a bit more on Dylan’s jumping and suggest a surprising possible explanation here] .

Dylan has always jumped a bit; in the past I’ve assumed this was frustration at not being understood or at things not happening as he expects. I’ve worked on the assumption that behaviour is communication and if Dylan jumps then the onus is on me to find a way to understand what he needs. I like the expression ‘behaviour which may challenge’ as it acknowledges that what one person finds unacceptable may be tolerable to another. I have tolerated Dylan’s jumping in the past. I don’t mean to suggest that I never intervened; I have had a long campaign about not jumping in upstairs rooms. I have spent years flying up and downstairs to respond instantly to Dylan’s jumping. The behaviour may not always be appropriate but it has never been challenging in the past. Recently, however, Dylan’s jumping has become much more difficult in that it is out of control and, given his size and strength, potentially dangerous. I’ve been responding to incidents on and off for three or four months now, without significant concern, but like the elephant in the room it is no longer possible to ignore.

I’ve started a chart. This makes me feel as if I have my toddler back again; it’s something I did when Dylan was little. So far the possible triggers for Dylan’s jumping include: Tuesdays; really sad scenes in certain films; change of routine; lack of routine; and change of support person. However, the GP suggests it could be neurological (the jumping is often preceded by a trancelike state). Equally, it could be his age: many teenagers and young adults develop behaviours that may challenge – it is not exclusive to autism. Twenty is a difficult age: that’s certainly when I was at my most difficult. The possibility that there could be an internal trigger makes me feel a bit helpless. If it were an external trigger – something in the environment – then if I could only identify it I could try and help. Currently, though, with incidents unpredictable but happening every other day and in the community as well as in the house, there are significant implications for Dylan’s support [I reflect further on Dylan’s charts here and here]

Becoming an elephant

I cannot help but be struck by the serendipitous timing of Dylan’s funding being confirmed amidst all this. The behaviour has implications not only for the type of support Dylan receives but also his weekly activities and risk assessment. The coincidence of need and funding has, for once, been helpful. I will need the strength and skin of an elephant to support Dylan through this though; the sense that I can no longer reach or make a difference to Dylan when he is consumed by the need to jump is very difficult. I try to remind myself that many parents, at some point, experience such feelings of helplessness about supporting their growing child. As Dylan becomes an adult he will no doubt continue to need different types and levels of support; perhaps I have done as much as I can, for the moment, by securing the funding which will allow him to access this.

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The photos were taken at zoos in Warwickshire and Kent during 2012-13.

For an updated summary of my battle to secure adult-sector provision for Dylan please see this post: