Three Years and Three Months: A Mother Adjusting

There is increasing pressure to evaluate things immediately. Have your students secured employment within six months of graduating? Did you enjoy this evening’s production? How would you rate your learning on this module?  I tell my students that some of the things they are experiencing will make different sense to them in the future. I’m not saying an instant impression is worthless but I always regret that we don’t revisit our evaluations months (or even years) later.

And so it is the case when supporting a disabled adult to leave home.  Although it is over three years since Dylan moved to residential care, I am struck by the extent to which transition is an on-going process and one that I am definitely still evaluating and adjusting to.

Exhaustion

When Dylan first moved to residential care I set myself the challenge, during the first 100 days, of recording my feelings about the process. That created a rich picture of the minutiae of adjusting to Dylan’s move: my daily blog posts were full of laundry, food and bedtime routines.  What I was too up-close to see at the time, however, was how exhausted I was.

Now I remember sometimes having to stop the car on the drive home from visiting Dylan, too tired to continue safely. There was a particular lay-by where I would sit, windows down, chanting half-remembered poems and songs to wake myself up. When I wasn’t visiting Dylan after work in those early weeks, I would be asleep on the sofa by 7pm. Perhaps my sleepiness was a mechanism for dealing with the emotion of the situation but I think I was also chronically tired after years of caring.

On the run-up to Dylan’s move to residential care I promised myself I would enjoy doing all the things I hadn’t been able to as a carer. I assumed I would be out and about, taking advantage of my sudden freedom to do as I pleased. What a mistake that turned out to be. Only very recently, more than three years after Dylan left home, have I found myself with a little more energy. I have started going out after work more often and staying up slightly later in the evenings.  I am amazed how long it has taken me to feel able to do this.

Involvement

Since Dylan moved to  residential  care I have phoned the home almost every evening.  This is not something I’ve enjoyed doing (I’ve written about that here).  An attempt to use Facetime with Dylan hadn’t worked, however, so a  telephone conversation with staff was my only option and my need for reassurance about Dylan was enough for me to overcome my dislike of using the phone.

The calls have been a hit and miss affair. Sometimes I was able to speak to someone who had been working with Dylan that day but more often the member of staff had to look for information about Dylan ‘on the system’ .  My experience has ranged from feeling reassured after a friendly chat to being upset  by staff abruptness. Evening  telephone calls from parents, I quickly realised, were not usual; even having established that nine o’clock was the best time to call, I knew my calls could be an irritation, particularly if staff were busy. They  were important to me, however; this was my son and I wanted to create a space in my day to connect with him.

Although the calls could be frustrating they helped me to feel involved in Dylan’s life. This summer, however, I had to re-think my routine. In June I heard that I had won a Northern Writers Award which involved funding to be used to complete the book of poems I am working on. I needed to spend some time away from home, free of distractions, in order to get on with the project. At the artists’ colony where it was suggested I go for a week, however, I would have only limited and intermittent contact with the outside world.

What was I to do? I knew I couldn’t turn down the opportunity because of a routine which was (I  knew in my heart of hearts) beyond its use-by date.  As Dylan was not aware of my daily calls, he would not know I wasn’t calling the setting each day; the only impact would be on me.  What was the point of me knowing whether or not Dylan was settled for the night? I couldn’t do anything about it. Staff would contact me in an emergency.  There was no guarantee that Dylan wouldn’t get ill or have an accident while I was away, but it would be very unlucky. I knew I had to go.

So as not to spend my week away worrying about being out of contact with Dylan, I practiced for it the week before I left:  I didn’t make any telephone calls in the evening or send any emails, other than responding to a request for information. The trial week helped me to break my evening routine and I coped perfectly well, while I was away, without a mobile network or internet connection.  In fact I did more than ‘cope’; I had a productive time and returned with the confidence to go away again.  Furthermore, I seem to have broken my habit; I haven’t made any evening phone calls since.

I report this because I am struck by how individual a process transition is for parents.  I have no doubt there are a range of parental responses to a disabled adult child moving into residential care. Probably there are some parents who never make an evening phone call, some who call occasionally and some who make regular calls for a limited time.  Perhaps some  parents telephone every day for the rest of their lives, but I suspect this is rare. I’m prepared to accept my own extended transition period might have been a bit of an outlying spike in the pattern of parent behaviour,  but everyone has to find their own way.  I am very grateful that staff at Dylan’s care home allowed me to take the time I needed and that no one ever suggested to me that I didn’t call.

Although this is progress there is a downside as well.  Since I’ve stopped making daily phone calls I don’t feel as involved in Dylan’s life as I did. Some evenings, to feel closer,  I bring Dylan to mind and sit with gentle thoughts of him. I suppose this is not dissimilar to my meditations on other people I love who have moved away. In this respect it is, I suppose, a natural letting go.

Letting Go

There has been another ‘letting go’ recently; since the summer I have accepted a more relaxed approach to the dietary routines which have previously been an important part of Dylan’s care. This was triggered by our holiday on the Isle of Man where  it was difficult, some days, to find a vegetarian option which Dylan wanted to eat. Two or three times during the week I let Dylan have a non-vegetarian option rather than ask him to wait until we found something else or were back at the cottage. This made eating in the community easier for Dylan and less stressful for me.

Although I never experienced Dylan’s vegetarian diet as a ‘problem’ while he lived at home, it has proved one of  the most challenging aspects of his move to residential care. Dylan has a limited diet (only things which are beige and bland to taste and smell) but he eats with huge enjoyment (I have written about Dylan’s favourite foods here).  When Dylan moved to residential care, something which was very important to me was that he should continue to eat familiar food which could comfort and support his transition. The psychological benefits of such foods are well-documented in relation to communities in exile and more generally.

My ‘100 day’ posts often focused on food and my frustration at the constant need to justify Dylan’s vegetarianism. At the height of the silliness, it was suggested that this might have to go to a ‘Best Interests’ panel for discussion as it could be considered a deprivation of Dylan’s liberty to eat meat. I asked whether Dylan’s diet would be similarly challenged if he were a vegetarian on religious grounds? When I claimed ‘cultural practice’ , however, I was asked to explain in what respect Dylan’s vegetarianism could be classed as ‘cultural’.

The constant  challenges and explanations were wearing.  Although the issue didn’t go to a Best Interest panel, in the event, Dylan’s vegetarian diet has been the focus of constant discussion at periodic reviews and  whenever there was an ‘incident’ involving food. Many of the ‘incidents’ in relation to food turned out to be triggered by Dylan being offered unfamiliar vegetarian foods.  So while he may love ‘vegetarian Kiev’, this is a particular brand of Kiev (quorn, entirely beige) not any old Kiev  – and especially not a Kiev made from aduki beans (wrong colour, texture and flavour).  So when Dylan rejected an aduki bean Kiev one night (and grabbed a chicken Kiev  being eaten by another resident) it did not mean that he does not enjoy his vegetarian diet.

Well, I am rehearsing old arguments here.  Although I found the issue of food the most exhausting and frustrating aspect of Dylan’s move to residential care, things did settle down eventually and fewer questions have been asked, recently.  In this context, my relaxation of Dylan’s dietary rules this summer could seem odd.  I am sure it surprised staff when I announced, at Dylan’s recent review, that I was happy for him to have a non-vegetarian option while he was out in the community if he preferred it to the vegetarian option.  Having realised, while we were away,  that this can be a sensible option, it seemed only right to apply the same principle to Dylan’s everyday life.

How do I make sense of this change of heart?  Mostly, like the relaxation of my daily telephone calls, as part of the process of adjustment to a child moving into residential care.  I think this is particularly relevant in the context of someone who lacks capacity. If Dylan cannot make informed decisions about issues such as diet, who should do so on his behalf?  Parents are used to taking such decisions and, I would argue, continue to be best-placed to inform decision-making during transition.  But over time (three years and three months, perhaps) it is probably right that a parent starts to step back and relax into a partnership approach.  In this spirit,  I have decided to trust staff to offer Dylan a vegetarian diet at the home but to have flexibility, if they need it, when out and about.

Is there any loss involved in this, as with the reduced telephone contact?  I think so, yes. As I noted above, the food we eat reminds us of home; it connects us to our family and community and creates a sense of belonging and identity.  Whatever a health care professional may say, I claim diet as ‘cultural practice’.  In this respect, even a slight shift in Dylan’s separates him from home a little. But this is probably no more than the adjustments my daughter might make to her diet as she learns to live away from home. So perhaps it is a sign that, like his sister, Dylan has flown…

 

Images:

The photograph of the porthole window is the view through the shipping container I stayed in during my residence at Cove Park. The photo of the rainbow over Loch Long  (featured image) was taken from my writing desk at the end of my week away. The other photographs were taken on outings and home visits during the last few weeks.

Autism And Deprivation Of Liberty: the ethics of food

Dylan 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

Clearly 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

In 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

The 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

I’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

I 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…

50 Shades Of Beige

In 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

Again 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

Although 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?

Because 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.

At 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.

*

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

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

Food 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

In 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.

During 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

I 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

I 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.

As 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

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

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.

For 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.