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.
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.
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.
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.
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.
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.
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
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.