Revival & update

It’s been a while but I am really keen to revive my blog. My husband reckons I can’t claim to ‘have a blog’ because, currently, it consists of just 3 posts but he is wrong and I will become a blog writer once more!

I am very pleased, and relieved, to report that much has changed since April last year. P is now within a healthy weight range for her height, and has been for about 4 months. I get asked, ‘what made her start eating?’ and, as usual with P, I’m not entirely sure! However, I can say, with confidence, that the approach we found most helpful resembled nothing of the conventional strategies to managing anorexia. It sounds dangerous but, basically, we left it to P. When I said to CAMHS that part of me felt that the food restriction was another phase and that left to her own devices, she would likely come through it (before moving onto the next thing), I knew I needed to qualify this with a prompt explanation and an acknowledgement of the risk associated with a strategy like this, which I did. The thing is, the way P deals with challenges is to work through the issue internally and then, when she’s in the right mindset (and only when), she moves on. This approach does nothing to quell my sense of helplessness and redundance as her parent! Now, I wasn’t suggesting we step back completely and literally just leave her to it. The plan, as always, was to provide emotional scaffolding and seize all opportunities to remind her that we love her and are always here for her. Recognising that there is always very little (nothing?) we can direct her to do or not do, we ensure that she is aware of the potential consequences and risks, remind her that the choice is hers and then, crucially, when endeavouring to impart any words of wisdom to her, we leave the room/walk away (mentally keeping everything crossed that she then mulls over what we have said). The idea was to hand her back the responsbility for her actions; while she craves the control, it’s the personal responsibility that comes with full control, that we need to encourage her to own. This strategy might sound crazily disproportionate to the severity of the challenge but it is powerful and, importantly for P, as someone with strong PDA traits, it gives her the control and autonomy to make choices, which we try to ensure are as informed as possible. The importance of handing back responsibility was introduced to me by my coach (CBT & coaching to support autism, ADHD & PDA). It is an issue that has become evident through her years of experience and she is aiming to conduct research to explore this concept.

As P began to eat more, the initial diagnosis that P’s CAMHS keyworker had proposed – back in February last year – seemed increasingly apt. It was ARFID (Avoidant-Restrictive Food Intake Disorder). At first I had rejected it because ARFID isn’t accompanied by a desire to be thin, and certain other typical cognitive indicators of anorexia, which P was displaying during the first few months of restriction. Up until a few years ago, ARFID was known as ‘Selective Eating Disorder’ and it has recently come to light in the news, as a result of a teenager losing his sight following years of a diet consisting only of Pringles, white bread, fries and an occasional sausage/slice of ham. Sensory issues underlie this ED and result in sufferers eating a very limited range of ‘safe’ foods. The kinds of foods P would eat suggested a preference for certain textures, e.g., porridge, couscous, noodles, jelly, peanut butter and chocolate spread. These are still her main foods but it’s not just the foods themselves that are significant, it also extends to her eating habits. She tends not to eat ‘meals’ (and she certainly doesn’t eat with any of us), instead she will create a concoction of, say, couscous mixed with (a lot of) ketchup and will eat small amounts of it with a teaspoon at various points in the day. It became a bit of a joke because, at one point, my mum counted 13 bowls in her fridge, each containing one of P’s creations. Being a staunch observer of ‘best before’ dates (relating to an intense fear of becoming unwell), P will stop consuming any food that has been sitting in the fridge for approximately 2 days. She won’t, however, dispose of said food so often I find myself torn between wanting to free up containers/fridge space and wanting to leave any food that P might potentially eat! There are still many, many foods that P will refuse to eat – bread, pasta, chocolate, crisps, to name a few – and it is over a year since she has eaten anything I’ve made for her.

I’m not sure if she does have ARFID, or even a typical ED. I wonder if her food restriction and eating habits are better identified as disordered eating instead – as a result of her need to have control. It’s quite possible I won’t ever get an answer to this and it doesn’t really matter, as long as she’s continuing to eat. In fact, the issue of P’s eating isn’t even on my list of things to try to get a handle on. In case you’re interested to know what the treatment for ARFID is, the fact is I don’t know! I do know, however, that because an understanding of the ED is in its infancy (at least I assume this is the reason..), sufferers are referred to Great Ormond Street hospital (GOSH) for assessment. CAMHS put a referral in to GOSH for P and they called me a few weeks before Christmas, to arrange an assessment date. The assessment would entail a trip to GOSH (1st hurdle), for a 3 hour stint involving questions for me (fine) and physical obs for P (2nd hurdle), while P is observed by a play therapist in another room (3rd hurdle), followed by inconspicuous recording of P during a mealtime in their canteen area (There. Is. Just. NO. Way). I explained my disinclination to accept this appointment and asked if GOSH could provide me with some guidance on how best to support P without the trip to the clinic. No, they can’t. While I’m on this subject, there is a post in the pipeline all about the challenges we’ve faced trying to access services (GP in particular), with a child who has great difficulty attending appointments and meeting demands. A way forward was proposed in this situation though and it is for CAMHS to request funding from our local authority, for the GOSH clinicians to visit P here. I’m unsure of the likelihood of the LA providing this funding but, I’ve come to the conclusion that the stress of an assessment and the scrutiny of her eating habits could send P back to the dark days of extreme food restriction, so we won’t be pursuing the involvement of GOSH. Choosing to decline intervention feels bold and it isn’t something I would necessarily have had the confidence to do a few years ago but I’m learning to trust my instinct (a work in progress!), even when the stakes are high – perhaps most importantly when the stakes are high.

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.

The invisible parent

It’s how I feel. I imagine it’s how a lot of parents feel.

So, P, our 11 year-old daughter, has now been given a diagnosis, from CAMHS, of ‘atypical anorexia’. She has not eaten for about 2 weeks. Annoyingly (‘annoying’ seems insubstantial but stick with me), I didn’t make a note of when the food cessation began – I’m not sure why because the notes app on my phone is rammed with all sorts of other potentially useful information, but not this. In case you’re wondering what passes as ‘potentially useful’, there’s:

my children’s shoe sizes (outdated)
plants I want to buy for the garden
a reminder to give the girls their pocket money each Friday
a reminder about how many locusts we should be feeding V’s frog (yesterday morning, we discovered a locust sitting outside of the tank in V’s bedroom – no idea how it got there. This concerns me.)
programmes I want to remember to watch on TV
a list of what I have (Ben has) put into the attic to store

And many more riveting things. Anyway, it has definitely been around 2 weeks and maybe slightly over. She was drinking a lot of Nesquik made with either green or blue milk and we worked out that she was getting around 1000 calories a day from this (I’d briefly considered buying wholesale) but then, last Thursday, she stopped with the Nesquik and who knows why. So, since then, apart from 2-4 cups of coffee or tea a day (made with milk and sugar), she isn’t having any calories.

So, why isn’t she eating? How did it come about? What’s her current mental/physical state like? What’s going to happen to her? What are we doing about it? All extremely valid questions and it’ll help me to structure my post around the answers to these.

Why isn’t she eating?

Honestly, I don’t know. I would say it is definitely to do with having control and, possibly, even a form of self-harm. The food restriction began last September and last September was when children went back to school after the summer holidays and she stayed at home (at some point, I will explain this part of the significant two years that I referred to in my last post). There was a lot of uncertainty around what would happen with regard to her education and when those changes would take place and, as is well recognised, uncertainty is not something that people with ASD find easy to tolerate. P definitely does not manage uncertainty well. So, my working assumption (one of my many) is that this was a significant contributor towards the eating issues. This and the fact that she has ASD (research indicates that there is a predisposition towards eating disorders among young people with ASD, particularly girls) and is approaching ‘that’ sort of age, becoming more aware of social media, etc. Since writing this, I have learned that the event that triggered it was the allergic reaction P had, to chlorine, during our holiday last August. Her whole body swelled up and this was enough to precipitate disordered eating.

How did it come about?

It began with her complaining that she was fat (she wasn’t) and that she wanted to be thin and, if I remember correctly (caveat: that’s a big ‘if’), it pretty much came out of nowhere. Almost straight away, she was on at me to buy her weight loss milkshakes that she’d seen advertised online. I was the worst person ever for refusing to buy these (didn’t I want her to be happy? These were the only things that were going to make her happy. I was, apparently, also solely responsible for her self-harm at the time too). Horrible old me. Thankfully, the desire for these meal replacement shakes and the constant harassment that accompanied it died off after a couple of weeks but the food restriction had begun. As with most things, P wasn’t particularly consistent with her approach to food but she was definitely eating less than before. At the time, she was fascinated by all things Japan and so began wanting to eat lots of sushi. We would buy her packs to eat (desperately hoping that this would be another short-lived phase and we wouldn’t have to sell a kidney to fund her new habit) and she even made it from scratch a few times and made up some little snack packs for her sister (I think P felt that V could use some encouragement in the healthy eating domain).
I’m pretty sure that, by this point, she had become fixed on eating an apple for breakfast. I can’t remember what sort of things she was eating at tea time but I know that she wasn’t eating regular meals, choosing instead to graze throughout the day. While she was eating, she wasn’t getting enough calories and her attitude towards food was worrying – she was very critical of others’ food choices and very black and white in how she perceived food to be either healthy or unhealthy and, if the latter, it was to be avoided at all costs. Having said all said, it’s P, so one minute she could be berating me for having made cupcakes (I went through a stage of being slightly obsessed with Sugar Rush and then, when I’d watched all of that, Zumbo’s Just Desserts. For a brief period, I was going to bake cupcakes for a living. That passed) and the next minute, she’d have whipped one out of the tin to eat. It’s this behaviour, i.e., occasionally eating foods high in fat/sugar, that means her diagnosis is ‘atypical’ anorexia, rather than just run-of-the-mill anorexia. Over the next couple of months, she went on like this and went through various different food phases (a baked potato every day, Mug Shots, omelettes). At this point, P was still on the waiting list for CAMHS support and, dutifully, I would call to update them each time we reached a new hurdle and/or P’s mental state took a nose dive; the last collection of calls had been related to her escalating self-harm and now she’d moved on to disordered eating. On their advice, I took her to a doctor at the end of November, for a medical check up. This was back in the glorious days when I could get her to an appointment – not without ample preparation and sometimes bribery (though what parent doesn’t use bribery?), but I could get her there. As usual, I sat there paying close attention to what she was telling the doctor because she hadn’t divulged a word of it to me. She told her that she wanted to weigh less than her 8 year-old sister and her ultimate aim, at that point, was to get below 6 stone (she is tall – 165cm/5’5″). As soon as we were out of the room, P said to me, “so what happened?” This question really highlighted to me her limited capacity to follow a conversation involving more than one person, particularly when not in her own environment and also, her ability with regard to processing information.

January brought with it a letter from CAMHS (and they say January is a dull month!), inviting us for an appointment with P’s newly-assigned caseworker. Hurrah. Despite the nature of all of my experiences with CAMHS up to that point, I was pleased that she’d finally reached the top of the list and the wait for support was over – ever the optimist (I can almost hear Ben scoffing at this; he calls me a pessimist. I tell him I’m a realist, though this is probably what every pessimist says). Eating was gradually becoming more restricted and P had begun to drink a lot of tea (I assume because it helped to fill her up and the milk/sugar provided her with some energy without having to actually eat food). CAMHS advised removing her access to scales because at the time, she was obsessively weighing herself and the worry was that this practice was sharpening her focus on her weight and food intake. So, we took away the scales and, very promptly, P stopped eating. We waited a couple of days and decided to return the scales – but only at my parents’ house as a sort of compromise. She began eating small amounts again. We figured she needed to be able to gauge the effect of food on her weight in order to feel comfortable eating. We also believed that there needed to be some sort of support in place before we began making big changes like that. Two weeks later was our second CAMHS appointment – this time I wasn’t able to get P to come along so I went on my own. I was anxious about the appointment because I knew that P’s caseworker (I’m going to refer to her as Mia) had consulted with the team and was going to let me know what support we could expect to receive from them. Being a ~~pessimist~~ realist, I was worried I was going to be really disappointed with the outcome and, as much as I prepare for meetings like this, I fret that, in the moment, my battle for support won’t be as effective as it should be (and I’ll kick myself when I get home and bang out a follow-up, ‘this is what I actually meant to say’ email).

Turns out, my fear of disappointment was warranted because I was advised that CAMHS didn’t provide ongoing support for ASD (this, I knew) and all of P’s co-morbidities were judged to be part of the ASD and therefore, would not fall under the remit of CAMHS support. I can’t remember if I was shocked to discover this (have I mentioned that I’ve not always experienced CAMHS in a positive light?) but I was certainly very disappointed, extremely frustrated (frustration: the key theme!) and angry, actually, that P had been kept on the waiting list when ASD had always been a factor. It wasn’t even like it was one person’s error in judgement, I was keeping CAMHS in the loop and specifically enquiring about her place on the list and when we could expect to receive support and nobody ever thought it prudent to mention that it may be that she wouldn’t be eligible for any help from them. I also couldn’t fathom how the decision about what was and wasn’t related to a person’s ASD, and therefore eligible, or not, for support, was made… Anyway, I asked about where the support she so desperately needed would come from. It should come from school. Well, fortunately for us, an EHCP had recently been agreed for P and there is a specialist school nearby, suiting her needs very well, that I was going to name in the EHCP so it was reasonable to assume that she would get the support she needed from that school. However, what if the Local Authority had denied her an EHCP (an outcome that I was, wholeheartedly, preparing myself for)? She was experiencing anxiety to such a degree, that attending a mainstream (or, as it turns out, any school at the moment) school was not feasible so where would she have received that support? I’m realising, while writing this, that I’m not strictly answering the question I set myself but a succinct writer I am not, so probably best just to consider yourself lucky to be getting all this additional information. You’re welcome.

CAMHS referred P to the specialist dietician – we received a prompt appointment and mum and I went along as P could not be persuaded to join us. We dutifully informed her of P’s history with food (not an awful lot to say about it really) and with her states of emotional and mental health and all about the current difficulties. With all that information, the dietician apologised profusely and said she couldn’t help us as P’s situation was very complex (no shit) and obviously tied into her ASD, which was not her area of expertise. I had that familiar feeling of P falling into one of the many dreadful gaps that trap people between services.

P was gradually increasing her food restriction and so, in early March, I called the GP and asked them to do a home visit (they love this) to check P’s physical health. Getting her out of the house was becoming even more difficult and she would totally refuse to even leave her bedroom a lot of the time. The doctor did come out and I was really pleased it was the same doctor that P had seen a few months earlier. Her obs were fine but the doctor explained that, that doesn’t necessarily indicate that everything is OK and that, even blood test results can look deceptively normal (the advice from CAMHS, back in the autumn, had been to take P to get her blood tested but with under-16s, this can only be done at the hospital and, even when she was prepared to visit the surgery, she wasn’t having any of the hospital). The doctor liaised with CAMHS and advised that they needed to provide P with support for her eating disorder. It was really hard to judge as a parent, because my experience of eating disorders is zero. I knew she had ‘disordered eating’ but was it an ‘eating disorder’? (Yup, there’s a difference). I’d only just sat back and exhaled, following the long-awaited decision from the SEN powers that be, that P’s needs were sufficient enough to warrant an EHCP. Now, I felt I needed to take that energy and direct it towards this new concern.

At that point, family therapy was potentially on the cards for us and I had an appointment to discuss the possibility of this with one of the CAMHS’ doctors. Thankfully, the decision to offer us the therapy was made before I even got round to having the appointment, once CAMHS learned of the escalation in the issues with food. It was around this sort of time that P took her food restriction to a new level and stopped eating altogether. It was around the same time that she was beginning to receive tuition from the specialist school I’d named in her EHCP (the Panel had decided that, given her anxiety and the length of time she’d been out of school for, it would be sensible to start with tuition in the home before offering a place at the school) so perhaps it was this change and the stress associated with having several strangers turn up each week to teach her, that drove her to exert this degree of control over her food. We don’t know, and may never know – it’s always a guessing game. This day, the first day of no food, was 23 days ago. (I now know exactly when it began because last week, P and I spent a marvellous evening in hospital and she divulged this information to the paramedics; the paramedics were required in order to get P to the hospital because she sure as hell wasn’t about to allow me to take her). I say ‘marvellous’ sarcastically but, actually, there were some marvellous moments in those few hours. One of those moments was when P put her arms out to me for a hug. A proper hug, where she actually allows herself to touch me. She did it while we were talking to one of the doctors. The doctor asked if she could talk to me and P said no, because she didn’t like to hear me talking about her, it makes her sad. And then it happened. To put this into context, because I appreciate that lots of parents get regular hugs from their children, it has been over 2 years since I had a hug like this from P. Occasionally, she would side onto me, or mum, and give us a ‘hug’, which tended to be brief shoulder contact but even this hasn’t happened in months and, for the past year or so, she has been extremely wary of any physical contact with us at all. It was the best thing. That evening also had its marvellous moments because P talked to me. Whether it was because we were in an alien environment and I was her port in that particular storm, I don’t know, but she listened to me and I got to talk, without being cut off as soon as a word left my mouth. The entire time in hospital wasn’t sublime but at least I know, if/when we have to go in again, these moments will make it bearable.

So, she’s not eating but she is definitely drinking. The sheer quantity of drinks containers I remove from her bedroom each evening is testament to that. Today, she branched out and drank Oxo cubes in hot water. I must admit, when I saw the foil wrapping on the side, I got excited because Oxo’s a bit like food (right?) but then I checked the calorie content on the box and realised that, at 9 calories a cube, I could calm right down. The other day, she drank some strawberry milk that my parents had in their fridge. This time, mum didn’t fall into the familiar trap of promptly replenishing something we notice she’s been consuming (this is a sure-fire way to instantly halt consumption of said product). She left it a few days and then casually replaced it with another bottle, and P continued to help herself to it. Win. Then I wondered about secretly replacing the strawberry milk with a ‘nutritional shake’. It was risky but worth a shot. Mum bought some and mixed it with some of the usual flavoured milk, to try to mask any foreign taste. Yesterday evening, she poured herself a cup. It was thicker than usual and left tiny lumps of white residue in the cup after she sipped it (gross). Understandably, she wasn’t about to drink anymore of it but I’m just relieved that it didn’t seem to occur to her that it could be more than just flavoured milk. Maybe she’ll revert to Nesquik?

What’s her current physical/mental state like?

She is very cold all the time (and she has always been a hot person), she is pale, she always looks tired, she has no energy and, of course, she is very thin. Her protruding shoulder blades and narrow hips are what strike me the most about her thinness. I imagine her physical state would be even more of a concern if, like most typical anorexics, she was obsessively exercising. Needless to say, I am grateful that, in this respect, she is deviating from the norm. She is almost completely sedentary; she spends her days and evenings in her bedroom – either here or at her grandparents’ – on her phone and iPad. She used to sit against the radiator in her room here, dressed in pyjamas, dressing gown, thick socks and surrounded by hot water bottles. Nowadays, she isolates herself even more by sitting with her back against the bedroom door, to prevent anyone from getting in.

Inevitably, her mental and emotional states are not good either. The isolation, the malnourishment and the impact of the anorexia ‘bully’ (I’ve read that it’s like having the voice of a bully inside your head all the time, similarly, I know of a child who refers to it as the ‘Leader’ – I have no idea if anything like this is true for P), on top of all the daily challenges she was facing before the eating disorder is too much to comprehend. What I see is someone who loathes interaction with adults and is angry with us all the time. From what I’ve read and the little I’ve heard other parents say about their experience of their child with an ED, it sounds as though the ED completely changes the way their child acts and behaves so they are an unrecognisable version of their pre-ED self. It’s not that way for us and that’s not a good thing but it means we’re sort of dealing with the devil we know (except we really don’t know him at all because he isn’t very communicative). How P is at the moment is not an altogether distant cry from pre-anorexia P; I’ve described it to people as P on a really bad day, every day.

What are we doing about it?

It doesn’t feel like we are doing enough but I think that’s probably quite a typical way to feel as a helpless, ‘invisible’ parent.

We are following the Maudsley approach, in order to try to encourage P to eat meals again. This is what CAMHS are supporting us to deliver through the weekly family therapy sessions. It basically involves setting the expectation that 3 meals a day will be consumed. The idea is that the parent takes back control. I do not have the time, or inclination right now, to explain the many splintered ways in which we have loosened control over the years, why we’ve loosened it and the myriad barriers that lie between us taking ‘back’ control. I assume it would, at least, be helpful to be able to recall when I was last in a position of control? Anyway, we aren’t exactly in a position to be picky about what strategies we try, so meals have been consistently prepared for her since our first therapy session, two weeks ago. She has not touched any part of any of them. Initially, we were following the standard approach, which involved us leaving the meal in the kitchen and expecting her to come into the kitchen and eat it all with us. If she didn’t join us, I was to convey to her my disappointment/concern around an hour later and just move on and persist with the plan, all the while remaining calm and compassionate. I totally get the calm and compassionate bit and, without wishing to sound like the perfect parent (HA HA HA), with P, I do always remain calm and, I think, compassionate too. But a few days in, Ben pointed out the enormity of the demand we were placing on her, in terms of asking her to come into the kitchen and eat, when that tends to be the busiest room in the house and she wasn’t eating meals in there before the ED took hold. So, for someone with PDA traits, that was something we needed to address and we decided to start leaving her meal upstairs instead so, if she decided to eat, she could do so without any of us watching her essentially comply with the demand. It hasn’t worked. Mostly, it just gets left but it has been thrown into the bathroom bin a few times and once, the plate of food was thrown onto the floor and plate smashed. I mentioned this in a support group I went to the other evening, in order to demonstrate how her show of resistance was escalating and another parent asked me what P had said about it afterwards (“Well, you shouldn’t keep trying to feed me”, in case you’re interested), which triggered the group facilitator to suggest not focussing on the behaviour, i.e., the plate smashing, but on why she did it. It’s a really simple thing to suggest but it didn’t occur to me to think beyond the ‘now, she’s throwing the food onto the floor’ action to what might be going on to have made her do that. Pent up emotion and frustration? There must be tonnes of it and she has no release for it at the moment. Maybe she’s pouring all of it into this extreme and unyielding control over food, which appears to have taken the place of the self-harm that preceded it.

My frustration and concern about the Maudsley model, a prevailing approach in this field, is that it is not tried and tested among the autistic population. It’s well-recognised that people with anorexia often exhibit ASD-like traits, such as a black and white, inflexible mindset, obsessive and repetitive behaviours, withdrawal from social interactions, sensitisation to signals of threat, reduced accuracy in reading the emotions of others (which, as we know from experience, has a far-reaching impact). Therefore, suffering from anorexia when you are already a person with ASD (particularly when you are struggling as that person with ASD), basically just results in barrier upon barrier to treatment and recovery from the ED. The books we’ve been recommended, and have read, have been worth reading; one talks the parent through a meal time with the anorexia sufferer and it covers all those bases but it doesn’t tell me how to get my child out of her room to even entertain the idea of contemplating a plate (or mouthful) of food. That’s another book, one that I think has yet to be written unfortunately.

So, the current situation is: the doctor is coming out weekly to do P’s obs and weight. In order to get a home visit, I have to go through the same conversation with the same male doctors about why I can’t just bring her in (I try to keep my cool but, while I can achieve this with P – and most of the time with V, who will totally lose the plot if I even begin to raise my voice – these exchanges with the surgery seriously test my patience) because they have to follow ‘best practice’ and that means trying to get her into the surgery rather than come to our house. This week, the doctor and I talked to P through her bedroom door for 20 minutes, trying to coax her out to be weighed, but to no avail. To be fair to P, she had been expecting the doctor the following day and the following day we tried again and eventually she emerged, to be weighed but nothing else – no obs and no discussion. A lot rested on the weight loss today. If it was a kilogram or more since last week, she was going to be admitted to hospital for ‘re-feeding’. It was less than a kilo so no hospital. I’d been mentally preparing myself all morning, for a few nights in hospital so, honestly, I was pleased we didn’t have to go but there is a part of me that thinks, sooner or later, she’s going to end up needing to be fed in hospital so let’s get it over and done with, and I’m aware that it might not just be the once either. Horribly bleak but pretty accurate I think. Plus, I function on a ‘expect the worst and then be pleasantly surprised if the worst doesn’t happen’ basis. It works for me.

As a little epilogue to this post, yesterday, I was advised by CAMHS that my request to trigger a CETR (Care, Education and Treatment Review) for P has been agreed. This was off the back of an email I sent to a member of the local NHS Clinical Commissioning group (and this, itself, was off the back of some advice I received from other parents in similar situations). I do not have a full understanding of the process involved in this but I do understand that it’s another step that can be taken towards ensuring that everything that can be done for P, is being done and the other benefit of something like this, similarly to an EHCP, is that it brings everybody involved a person’s care together, and on one page. I hope. I’ll write more about it as I figure it out a bit more.