The dominant force

The eating disorder (ED) is the dominant force. I feel like it is ruling my life at the moment, my happiness hinges on P’s food intake, which is a fraction of what she should be consuming, based on the meal plan that the hospital gave us when she was discharged 11 days ago (I am aware that if I feel it’s ruling my life, it must be 100 times worse for P). Worrying physical obs (hypothermia, postural hypotension) and a rate of weight loss that put her in the ‘high risk’ category of the MARSIPAN (Management of Really Sick Patients with Anorexia Nervosa) checklist, led to her admission to hospital for re-feeding, 17 days ago. While in there, she did what she needed to do to get out again, i.e., she ate all the meals and snacks they gave her. She began on one quarter portions and worked up to ¾ portions. She gained a kilogram in weight and once medically stable, she was out and we were to help her to maintain the progress at home. It’s not that simple though.

Anorexia is an incredibly powerful, and brutal, mental illness. It has been established, formally, as the deadliest mental illness, due to its mortality rate and chronic nature. I think this is probably a surprising fact for a lot of people but, even though we’re new to it, I can totally see why it has achieved its lethal status. Throw autism into the mix too and the rigid mind set, rule-based behaviour (e.g., ‘I can only eat these kinds of foods’, ‘I must not eat more than 500 calories a day’, etc.), mood swings, generalised resistance and anxiety are bigger problems than ever – partly because research shows that ASD-type characteristics such as these are exhibited by individuals with an ED (so someone with an ED and ASD can be expected to present with a double whammy) and partly because the stakes are so high; being resistant to leaving the house when the destination is unfamiliar is one thing, being resistant to any food or liquid intake is quite another. Currently, the bag in our vacuum cleaner is filling up with entire meals that have been hurled across the room in an act of almighty repulsion (“I’m not eating that”). It’s really important to note, and even more important for us to constantly bear in mind, that this type of behaviour comes from the ED and not the sufferer and that food restriction is not a demonstration of stubbornness or defiance. I felt very uneasy with one of the nurses on the ward during P’s hospital stay because she appeared to hold this dangerously misinformed perspective.

For the first 9 days post hospital-discharge, we were managing to get P to eat something at most meal and snack times. It wasn’t anywhere near enough but she had broken the ‘not eating anything’ rule that she had set for herself prior to hospital admission. Each meal and snack was demanding a concerted effort on our part, to get her to eat even one mouthful of it. I held a time limit of 30 minutes in my head and during that time, I would employ the tips from Eva Musby’s book, along with odd bit of pleading and gentle (and at times, not so gentle) reminders of the consequences of not eating. In addition, I was finding myself offering incentives for eating and engaging in a fair bit of negotiation, a long-established and unavoidable feature of my parenting technique. I was very surprised to discover that praise seemed to be effective too; often, praise for eating, in people with an ED, is negatively received because it can act to reinforce the perception that they have failed in their quest to control their food intake. Without much consideration I had initially dismissed praise as an effective tool in our case because historically, P has not reacted well to typical expressions of praise. For this reason, I did not praise her once for any of the eating she did in hospital and chose instead to exude an air of nonchalance at meal and snack times (which took a lot of effort!). We hadn’t been home long when, after eating something, P asked me if I was pleased with her for eating and when I told her I was, she beamed at me so since then she has been showered with praise for eating.

However, over the past 48 hours, anything we might have felt we were achieving has dwindled down to nothing. After a fairly successful lunch yesterday, we agreed on a dessert (offering any kind of choice in terms of eating during the ‘re-feeding’ process is not an accepted feature of the Maudsley method but it is one of the tweaks we found we had to make in order to get P to eat anything and, in the glaring absence of any ASD-based guidance on anorexia treatment, we are very much finding our way in the dark) but when I brought it in, she flatly refused it and told me that we wasn’t going to be eating that, or anything else. This is a pretty typical response from someone at this stage of ‘recovery’ (this is so not what this feels like) but the way she presented this refusal marked a shift in her attitude since coming out of hospital and, worryingly, was reminiscent of her behaviour prior to hospital, when she went without food for around 28 days. Later that day, she demanded I allow her to go to her dad’s house to stay. As tempting as this is (hey, this is your problem now!), it is in no way something I am prepared to let her do. For starters, she hasn’t stayed there, or wanted to stay there, for over a year and the only reason she wants to now is because she knows she won’t get as much hassle about eating from him. She admitted this is true. Secondly, I have very little faith in his ability to look after her and support her emotional, and many other, needs. This was the case before the ED and is even more the case now. For her, it is the easy way out. Her current stance is, she’s not eating anything if I don’t let her go and, for the first time since being home, she has shut herself in her room and is actively avoiding all contact with us.

Last night, I discovered an oily patch on the front of a pocket on the sweatshirt she’d been wearing. It smelled distinctly like the chicken nuggets she’d been given for dinner and the crumbs from various foods inside the pocket confirmed that she’d been pocketing food and taking it upstairs to dispose of down the toilet so it’s impossible to know exactly how much food she was even eating when she was eating, and how much got flushed or thrown out of the window (her sister discovered one of her snacks in the garden, under her window). P is a very honest person and this kind of behaviour demonstrates the deceptive and manipulative nature of an ED.

So, it feels like we are spiralling back to the dark days of a couple of weeks ago – waiting for her to become unwell enough to require hospital admission. How long can we continue in this way? The thought of her in an inpatient unit is as horrifying to me as it is appealing as I constantly wonder if we have the expertise to help her to beat this illness at home. She is only 11 and has autism and, for these reasons, CAMHS are extremely reluctant to consider an inpatient unit. I get this but I have a feeling that she will end up an inpatient before too long. It also pains me to wonder if she might also end up being sectioned in order to get her into a unit, or to tube-feed her. These thoughts make me feel sick, and just really sad. A few months ago, I thought that with the ASD diagnosis and then getting the EHCP and tuition in place, we might finally be able to move forwards and guide her into a more positive place but all that has been eclipsed by this horrible illness and our new battle to help her through it without devastating physical and emotional consequences.