The ‘Fever Effect’

P has been unwell recently, with tonsilitis, and yesterday the changes I observed in her behaviour reminded me of a phenomenon I’d read about, called the Fever Effect. This phenomenon is characterised by an observed temporary relief of autism traits in the person with the fever, e.g., stimming behaviour, irritability, inappropriate speech, and obviously many more.

Ever since P was very young, I’ve detected a definite change in her behaviour whenever she’s been ill (and not necessarily with a fever) but I hadn’t realised until quite recently – when I came across this article – that this was an actual ‘thing’ that other people experienced too and that has been subject to scientific research and is absolutely deserving of further investigation. I think I had always just assumed that, because she was poorly, she was tired and, therefore, basically, she didn’t have the energy to fight me every step of the way, over every single little thing. The effect was dramatic: she would sit with me and watch TV, she would speak to me in a calm and pleasant manner. I’m not sure I can recall any other specific examples – perhaps because I don’t have many memories of her being unwell to draw upon – but I can tell you, without any doubt at all, that when she was poorly, she was a different child.

And so, the Fever Effect has taken hold of P for the past couple of days and I have embraced it. If I had to sum it up (and I feel it’s probably useful to do so), I’d say P has been agreeable. Now, ‘agreeable’ may be a bit of an insipid way of describing someone but in this case, it’s a pretty powerful adjective because agreeable is exactly what P is not. Ever. At least not under any typical, good/mediocre-health circumstances. Before I go into a bit of a detail regarding my experience of the Fever Effect on P, I think it’s worth noting that her behavioural response to being unwell is also interestingly aberrant. It seems logical that it would be because, well, her behavioural response to most other things deviates from what I consider to be typical, so why should the state of being unwell break the pattern? Firstly, I don’t usually realise she is ill until she is ill; a charming example of this was last June, when she revealed to me her already-quite-nastily infected toenail that must have been causing her some serious discomfort for a while before it occurred to her/bothered her enough to tell someone about it. (As an aside, this sodding toenail became the bane of our lives until it was finally surgically removed 6 months later). When she WhatsApped me a photo of her throat the other evening, it was already in the unmistakeable grip of infection. It looked red and swollen, with a generous scattering of white spots. I’d told her it looked sore and asked if she would see a doctor about it? “No”. Maybe she could use some of the throat spray I’d bought a couple of weeks ago when she’d mentioned having a sore throat? “No” (had I read about the side effects?) How about a honey and lemon drink? You can guess the answer. That was the end of that ‘conversation’. She doesn’t ‘act’ ill, the way that V would do with a similar infection, or the way I did while nursing swollen tonsils as a child (lovingly described as “pitted footballs” by the surgeon who removed them when I was 16). She appears to have quite a high pain threshold and, despite reacting in a somewhat extreme way to things that many people would consider insignificant, she often takes pain in her stride.

On Saturday, I noticed the Fever Effect (FE) when I found myself having a civilised discussion with her but yesterday was when it really prevailed and I welcomed it with open (but always wisely cautious) arms. I’m wondering if me sharing the the idea of embracing something that alters my daughter’s behaviour so much might be making me sound like a bit of a horrible old bitch, but honestly, I’m not (and you’re just going to have to take my word for this or, you know, don’t). It’s just that I was delighted with the prospect of being able to communicate with P, of having her stand near me, of asking me a question and pausing to hear my answer, and all the rest. And, yes, I have wondered if the P I see when under the influence of the FE is how P would be if she weren’t autistic and I remember wondering the same years ago, before the ASD diagnosis, and allowing myself to contemplate a life in which my child acted with me the way I saw other children behave with their parents.

So, what kind of effect does being unwell (I don’t actually know if she had a fever or not) have on P? Well, for starters, she came out shopping with us and that in itself speaks volumes! But, also…
she chatted to us
she managed to engage with her sister without firing the brutal remarks at her that she usually appears to feel compelled to do
she spoke to me amicably, refraining from recoiling the way she usually does when I stand too close to her
when she’d reached her shopping/spending-time-in-a-public-place limit and wanted to go home but there were still two shops we had promised her sister we would visit, she explained to us why going to sit in the car with Grandma wasn’t an adequate solution (because she wouldn’t know how long she would be sat there and would constantly be texting me to find out; this is both accurate – the constant texting – and understandable, because she finds unpredictability a huge challenge and having her explain these things was so valuable), instead of instantly becoming hostile to such a degree that we all felt compelled to leave immediately
she also explained her refusal to go somewhere for lunch (she didn’t want to spend time sitting in a restaurant; a primitive explanation but far better than a blunt rejection)
once we were home, I discovered from B (husband) that she had been in the room when her little brother had been sick (what welcome germ hosts we’re being!) and not only had this not resulted in her demanding to leave the house, it also didn’t provoke any other extreme behavioural reaction, the way it would normally do.
I really could continue with more examples (don’t worry, I won’t) but, for me, I think the most striking difference that the FE makes overall, relates to how she communicates with us and that might be because communication is such a fundamental thing and yet has always been the most prevalent issue for us (though I do recognise that the actual issue is the anxiety that underpins this).

Thinking about its effect on communication, it occurred to me yesterday that when the FE takes over, I react in the same way I do when I’m presented with the opportunity to talk to P – my brain bombards me with ways of utilising this different version of P! Ooh, I could suggest we do this, or go here, or maybe I should use this time to remind her of the importance of trying to go to sleep before 1.30am or going into school regularly. It didn’t actually occur to me to attempt to discuss things like this but fortunately, it occurred to my mum so thanks to Grandma, for ticking these boxes.

One of the best things about the FE? We get a much-cherished glimpse into the weird and wonderful world of P, and bonus exposure to her frankly-quite-dark and pretty left-field sense of humour. During a mildly alarming conversation, she spoke quite a lot about killing people. She had some pertinent questions: why do people have windows, when there’s nothing to stop someone who’s “high on crack” from shooting us through said windows? What’s to stop a person in a car from shooting someone as they drive past? “It’s easy”. I remarked upon ease and opportunity not being the key factors in a murder and I presented her with the concept of a person requiring the motivation to kill; this, and the notion of morality genuinely appeared to evade her (I return to ‘mildly alarming’). We touched upon the idea of risk assessment and once we had moved past the assumption that glove-wearing would protect a perpetrator from leaving behind any form of DNA or prints, she concluded that fleeing to Poland would then be the obvious move. She always has had an answer to everything.

Access denied.

As I mentioned in my last post, I’ve been planning to write about the trouble we’ve had accessing healthcare, specifically during the last year. But, as I sit down to make a start on this post, it occurs to me that healthcare isn’t the only thing we struggle to access (or CAMHS, school, the outside world generally, though these are all problematic). The biggest issue is accessing P herself. This has always been an obstacle but in recent years, the obstacle is greater. I’ll explain.

I’ve always found ‘reading’ her a challenge, even though I’m her parent and have, so far, known her more intimately than anyone else, not to mention for her entire life (obviously). This may well be a common feeling among those who parent a child with ASD, I’ve never asked anyone. So, there has always been a bit of a mental and emotional distance between us. I’m currently striving to recall if, in her younger years, she would talk to me and tell me what was going on for her. She has certainly never done this to the extent that V does but, to a degree she did. And, actually, it pains me to admit that, often, I dismissed things she shared with me because her account of, for example, what had happened at school seemed implausible or warped; she was always the wounded party and I would try to have a discussion with her about these situations but would promptly hit a brick wall because of a dearth of social/emotional understanding, an intrinsic resistance to me and anything I might suggest, or even just share with her and, I’m sure, lots of other factors too. It angers and saddens me because, for years, I didn’t have a good understanding of what was going on for her (the ASD/PDA) or I had an idea but everyone I spoke to, outside of my family, dismissed it and so I didn’t fully accept it myself and, therefore, I didn’t fully accept the issues P had. I researched the hell out of PDA (and even produced a research project for my Masters on the subject) but, crucially, I recognise now that I had, to a degree, a lack of insight and compassion for her struggles and the behaviours she displayed that were functional for her in one way or another, but were bloody hard to manage from my point of view. I can recognise this clearly because this changed once she’d finally been assessed and diagnosed with ASD/PDA, though the ‘breakdown’ (not a formal label but perhaps best understood as this) she experienced at age 10/11 contributed to this too. I felt as though a few layers of the enigma had been lifted away and at times, I feel an overwhelming sense of compassion, and sometimes sorrow, for her because certain behaviours begun to make sense where I just hadn’t been able to see past them before.

Despite the development in understanding, we are now faced with a physical distance on top of the existing mental and emotional distance. This begun during ‘breakdown era’ when I was no longer granted any physical contact (and nor was anyone else). In fact, frequently, we can’t even be in the same room as P. This is nearly always the case when she goes into the kitchen to make herself something to eat – she wants to be in there alone and I attribute this to her disordered eating and heightened sensitivity around food consumption. Very often though, she won’t share the living room with me either. Sometimes she will allow me, say, 10 minutes in there with her before I have to leave, or as soon as I sit down, she will spring out of her seat and go to her room or, on particularly bad days, she will start screaming at me as soon as I step into the same room as her. Yesterday was one of those days. Often, I have no idea what kind of reaction to expect. It’s important for me to clarify that P’s need to be left alone isn’t something borne from an ill-tempered, teenage angst (though where this starts and ASD/PDA ends is often impossible to establish!) It is to do with control and anxiety and her limitations in terms of social interaction. At times, she cannot handle the physical presence of another person and the demand that being with another person creates (especially if that person attempts to engage with her, or even just say anything out loud). She feels more secure when she can control her environment – and we can all identify with that. Being on her own not only eliminates the potential requirement for interaction, it also greatly reduces the the unpredictability that being around other people generates and therefore helps to minimise her anxiety levels. Unpredictability is something that she really struggles with and this is a common difficulty for those on the autistic spectrum.

Attempts to identify a reason for rock-bottom tolerance on some days is futile. Questioning or suggesting a reason to P, or pondering out loud in her presence (my preferred approach) about why she might not be having a good day are either ignored or dismissed – and dismissal can take many forms (hint: it isn’t usually the gentle type). I know from PDA literature that variable tolerance levels are related to anxiety levels (high anxiety = low tolerance) but any perception I had of anxiety as a fairly straightforward, detectable state is long gone. It has many, many faces. I think this perception is quite a common one and is a myth that really needs dispelling because many behaviours that are underpinned by anxiety are effective at concealing this and therefore an appropriate response – one that seeks to address the anxiety and minimise it – is often sidestepped. So, basically it’s a guessing game. Guessing is what I feel I spend a lot of time doing. Actually, let’s refer to it as calculated judgement-making (though sometimes it is straight up guessing); what has upset her? Why has she suddenly decided not to go to school/that appointment/for a walk? Why is she refusing to see that person? I could go on. It’s really difficult, especially when I find myself telling a teacher, or her CAMHS keyworker that I just “don’t know”. I don’t need to spell out the kind of impact this uncertainty has on putting appropriate interventions into place.

We have tried, and continue to try, different ways to communicate with P. I am always open to new suggestions, so please leave a comment if you have one! Text messages sometimes work but she has to have a vested interest in the subject of the message or she won’t read it/respond. Letters (short notes are more accurate) can work – usually there’s evidence that she’s read it (if I was to just ask her if she’d read it, she’d either not respond at all or give me a grunt) but she wouldn’t write back. The most I could hope for would be circling an answer but, again, she’d only do this if she felt it was in her interest to do so. For example, as part of her needs assessment when I applied for her EHCP (Education, Health & Care Plan), an Educational Psychologist visited our house to ask P and me some questions. P wouldn’t come out of her room so the EP – after trying to communicate with her from the bottom of the stairs proved fruitless – wrote down 3 questions, with 2-3 possible answers for each and asked P to circle her preferred choice. P did comply with this because this was the alternative to having to engage face-to-face with an unfamiliar person. This brings to mind a form that P’s school mentor worked with her to fill in, which formed part of the annual review for her EHCP; where it said, “My name is P…..”, she wrote next to it, “no it isn’t” (on a similar form, next to where it asked her to write her name, she wrote “nothing”) and, for about 6 consecutive questions, she gave an identical answer – “art”. She wrote this in the smallest possible writing (so small in fact, that the school administrator couldn’t read it!) To me, these are brilliantly clear examples of her demand avoidance. Often it’s not as clear cut as that, and everything involves reading between the lines and a bit of detective work to identify the demand that she is resisting/avoiding so I relish explicitness when it presents itself! Back to the point, we’ve also tried a ‘one knock for yes, two knocks for no’ approach when she is sat behind her bedroom door, refusing to engage. I know a couple of school tutors had (limited) success with this but it rarely works for me. Otherwise, what we tend to do is seize the opportunity when we get it. An ‘opportunity’ looks like this: P is physically present and in the kind of mood which permits a verbal transaction. This can happen a few times in a day (a good day!) or not at all in a day but on average, there are one or a two opportunities a day, so I pick my battles and have frequently found myself broaching as many relevant topics as possible during the opportune moment e.g., reminding her about an upcoming change in routine/asking if she’d like me to book her an eye test because of the headaches she’s been having/exploring her resistance to go to sleep every night, before *crash!* She’s shut down again. (And then I feel bad because I neglected to attempt to have a lighthearted and ‘carefree’ exchange with her).

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.

“You’re very calm about it all…”

This is what one of P’s (new) home tutors said to me last week, as I was giving her a bit of background about our situation and the issues P has. It’s not the first time someone has said something like this to me when I’ve been talking about the ups and downs of our family life and I’m never sure how to react, or how to take it. I could take it as a compliment but then, maybe it’s a bit of a backhanded compliment, i.e., how can talking about this not be inducing an emotive response from me? I just told her that I suppose, I’m just used to it; used to the ups and downs and used to telling people about them – as you’ll begin to understand as you read on!

With 5 days to go until the family therapy/anorexia intervention begins, I’m going to fill in this gap with some posts about other stuff. My intention is to provide some background and context so readers can make the most sense of my posts about our journey with FT and, hopefully, relate to some of it as well.

Over the past 24 months, I’ve recounted our story to so many different professionals but always with the same intentions – to encourage them to appreciate the scale of difficulties, understand why it’s difficult (as pretty much any parent of a child with additional needs will know, it’s the quality of the parenting that is under the spotlight first – this is a particular problem when the child only seems to present challenges in the home environment (“well, something must be going on at home…”)) and not to forget, the all-important underlying reason: to get some bloody help. In these 2 years, I’ve sat and shared our story with:

Teachers, Headteachers, SENCos (Special Educational Needs Coordinators), ELSAs (Emotional Literacy Support Assistants)
Social Workers (truly the worst thing about 2018 – there’ll be a post about this)
Hypnotherapist (for V)
Counsellors (one for me, one for Ben)
MABS (Multi-Agency Behaviour Support Service) Family Worker and MABS Teacher Advisor
Early Help Support Worker
Specialist Coach – supporting families of children with ASD (receiving support from this coach was a game-changer and there’ll be more about that, too)
Educational Psychologists – two of these, one much more helpful than the other
Occupational Therapist
Psychiatrists – two of these (one provided P’s ASD diagnosis, the other one Ben considered very handsome)
Speech & Language Therapists – two of these (one provided P’s ASD diagnosis)
CAMHS Caseworker
CAMHS Family Therapist
CAMHS Crisis Team
GPs
A&E doctor
Facilitators of, and other parents in the NVR (Non-Violent Resistance) course that Ben and I attended (all 24 hours’ worth – made possible by both sets of grandparents covering childcare for all 12 weeks)
‘Starlight’ ASD Support Worker (independent organisation; the lady works with P each week)
School Nurse
Specialist Dietician
P’s home tutors

Side note: last week, P began medical tuition – her timetable consists of 6 lessons a week, each delivered by a different tutor who comes to the house. They are all linked to a local specialist school and have experience and training in working with people with ASD and anxiety. Unsurprisingly, she’s particularly forthcoming in terms of engaging with the tutors, given that these are new people coming into her home and she hasn’t been to school since July 2018. We hope that one day, we can get her a place at the specialist school. I’ll talk more about all this another time.

In the spirit of ‘keeping it real’ (it’s the weekend, after all), this photo shows the results of my brief interlude from writing, to help V set up her ‘school pupils’ (I believe teacher is on her career shortlist, along with vet and popstar)

As you can see, the list encompasses a range of fields – from education to healthcare and represents varying levels of accessibility too, i.e., people a parent could just engage themselves (e.g., school nurse) to people that are more difficult to access, either because there are necessary eligibility criteria to meet (e.g., MABS, CAMHS, etc.) or because it isn’t a free service so you have to have some money to throw their way (genuine endless thank yous to my parents) (e.g., the Specialist Coach, ‘Starlight’, etc.). Potentially though, the primary barrier to accessing any of the people from the list is knowledge that they exist as possible sources of help in the first place. I knew of some of these people from my experience prior to the last 2 years (I began fighting for support for P and for us when she was 4) but the others became known to me through:

Facebook groups (there’s a group for everything – it might make your news feed really bloody depressing but I’ve found them so helpful)
Other parents (this harks back to the comment in my first post about isolation, as often parents don’t know any other parents in a similar position – or think they don’t. Talk to people, you’d be surprised – I constantly am)
The PDA (Pathological Demand Avoidance) conference that Ben and I went to last year. I would highly recommend this to any parent who thinks their child might be displaying some PDA traits – it’s a big gathering of like-minded parents and carers (at one point, I felt quite emotional sitting there among all these people who had insights into the kind of challenges we faced daily and it made me wonder what it had taken for parents and carers to be there that day minus their children), the opportunity to attend relevant and interesting workshops and listen to parents and professionals speak about all things PDA (and more). It was at the conference, that we came across ‘Side by Side Coaching‘, which, as cheesy as it sounds, changed our lives. All I’ll say about it at the moment is that the coach I had (Cathy) was the first professional in six long years to completely ‘get’ P and the problems we were facing and, initially, that was just from a 15 minute phone call! I could have cried after having someone – a professional no less – actually listen to me and understand what we were going through (chances are, I did cry – it doesn’t take much).
A series of workshops run by our local CAMHS – free for parents and professionals to attend. I don’t know how often these things are run – we’ve only been to one – but as well as the workshops (I remember we went to one about ASD and another about violent behaviour) there were lots of stalls and information, not only about CAMHS but other organisations and charities there to support individuals and families. At that kind of thing, there’s also the chance to quiz professionals, such as clinical psychologists and other CAMHS workers. Given how bloody tricky it can be to get one of them on the phone, this was a golden opportunity!
Our Local Authority’s ‘Local Offer’. I only came across this because I got a leaflet about it in some stuff from Social Care. Google informs me that the Children and Families Act (2014) established the requirement that every Local Authority publishes its own Local Offer, which sets out what provision is available, locally, for children and young people with special educational needs (SEN). I’ve found a lot of information this way, so definitely worth a look.

So, I had been trying to get the powers that be (basically, schools and CAMHS) to recognise the extent of P’s difficulties and the massive impact that it was having on our whole family since she was 4 (reminder: P is 11) so why did it take so long (why wasn’t anyone recognising the problems?) and why, above, am I just referring to the last 2 years of support we’ve received? I’ll address the first ‘why’ first:

Why wasn’t anyone recognising the problems?

Masking. Basically, ‘masking’ is when a person with autism works hard to cover up the signs that they have ASD, to enable them to fit in with others and not stand out. For this reason, some argue that it is an innate survival mechanism. It’s a really interesting subject and worth Googling for more information. Or, you could read a book or something. There is so much information out there on autism and masking, so why it still seems like such an alien concept to so many professionals is truly bewildering, but unfortunately, this is my experience. I first came across the idea of masking when I was researching PDA for my MSc dissertation as the tendency to mask, to the extent of having a ‘Jekyll and Hyde’ appearance, is characteristic of PDA and is one of the things that tends to make recognising PDA so challenging.

To every single one of the people in the list above, I would have described P as having a ‘Jekyll and Hyde’ character. It was my go-to description in an effort to try to impress upon people (schools, mainly) how very different ‘home P’ was to ‘school P’. Generally, whoever I was talking to would nod sympathetically and assure me that very often, children do act very differently at home and, exasperated, I would force a slight smile and explain that I understood that but this is different – this is like Jekyll and Hyde; she is completely different at home.

Can you imagine how utterly exhausting it must be to mask for the each and every school day? Can you then imagine the impact of this mentally and emotionally exhausting behaviour on the child – after the school day has ended and, crucially, in terms of a prolonged effect? It isn’t pretty. In our experience, it’s zero tolerance (for anything), constant aggression and anger (and violence if you don’t know how to recognise when she’s had enough) and generally, being ferociously unpleasant to be around. It’s hard (hmm, impossible) to untangle the effects of masking from the ASD traits, the hormones (at her current age), and the upshot of P being a fiercely intelligent and strong-willed individual but, from my experience, this is what we see when P has been masking and is anxious. Not ‘or’ is anxious because, understandably, masking and anxiety are synonymous with one another and sadly, I’m not even sure I could separate P from her anxiety.

And, what’s so significant about the last 2 years?

Because, quite simply, over the past 2 or so years, the shit hit the fan. Over and over (and over) again. Finally, people had to sit up and take notice, which, of course was what I had wanted for a long time but if it could have happened in other, less destructive ways, I would’ve been OK with that. But I can’t have it all, and at least we started getting support. There’s no way to succinctly sum up the 2 years in one post as we all came up against so much (not all of it bad, e.g., E was born!) and so much has changed, lots of it for the better. The various events, support we’ve received, headway we’ve made, challenges we’ve faced is the stuff of several posts but what I will do is describe what kicked off this 2 years of shitty fan.

To set the scene a bit, in autumn 2016, we moved house. We only moved 5 miles but it was a new house, new school, new Brownies (for P). Add to that, it was around that time that we discovered I was pregnant with E so, all in all, lots changed or was due to change and you don’t have to be an expert in autism to know that generally, people with ASD do not do well with change. Actually, the first few weeks were quite settled and it was V who seemed to be struggling more with the change but apparently, this delayed effect is often typical with girls with high-functioning ASD because, for a while, they try really hard to make everything OK. Looking back on things, this tended to be the case with big changes – it would take a little while before we’d observe the impact on P. Totally lulled into a false sense of security.

A few weeks into the new school (it was the first term of year 5 for P), I got a call from the Headteacher, asking me to come in for a chat that afternoon. This was P’s 6th year at school and this had never happened before (did I mention the masking?) I wondered what on earth had happened and went along that afternoon to find out. What had happened was, the teaching assistant (TA) had overheard P telling another child that her stepdad punches her. Yep. Obviously I was horrified but, actually, I wasn’t that surprised. And, there, with the Headteacher I’d never met before, I shared our story. It was the first time in a while I had discussed it all and, as I usually do, I felt like I was sharing too much – being a bit too candid – but she needed to know it all so she could have any hope of understanding why this ‘revelation’ wasn’t more worrying to me. Do not misunderstand me – I found it extremely worrying but I’d heard these types of ‘revelations’ from P before and had wondered if I’d ever find myself in this situation. I’ll explain with an example (the same example I provided the Head with during that conversation): when P was 5, there’d been a situation and I had taken her by the arm and led her to the bottom stair (back in the day when I still used ‘the step’). After her 5 minutes, I attempted the discussion around why I’d put her on the step and she told me off for smacking her arm 10 times. She then went on to mimic the 10 smacks I had supposedly given her and informed me that she would tell her teacher what I had done and that I would get into trouble. (I was keeping a P related diary at the time and fortunately recorded this event but even without it, this memory sticks with me). At the time, I remember thinking, ‘wow, that would get me into trouble, one day that might happen’. And after many, many more similar occurrences down the line, here we were.

Side note: you might be wondering what underlies this kind of behaviour. Because it was just something that used to happen, that is, P claiming things happened when they didn’t or, more accurately – and this is how I would always describe it to people – her seeming to have a warped or skewed perception of events, I just tended to accept it as one of her ‘quirks’. She didn’t make things up out of nowhere but, often, her interpretation of what had happened was exceptionally different to what had actually taken place. For example, here, the act of me holding her arm translated to ten smacks on her arm. Due to more recent implications, this trait of hers has been unpicked a bit but I’ll save that for another post.

Except it wasn’t me she was incriminating, it was Ben. I was positive it wasn’t true. Not in a blind, “oh, my husband would never do that” instant dismissal type of way but in a carefully considered, “no, Ben wouldn’t do that” type of way. Besides, it wasn’t coming out of nowhere – there was plenty of history, a snippet of which I’ve shared here because, obviously, capturing what was then 5 years’ worth of history isn’t feasible (quite simply, I just don’t get enough child-free sitting-at-my-desk time!)

As protocol quite rightly dictates, a referral was made to Social Care and within a few days, they had made contact with me and arranged to visit – to talk to Ben and me and to the girls. As it happened, this visit fell on the day we moved back into our new house. (After 2 weeks in our new house, we’d uncovered extensive water damage and rot to all the downstairs walls and ceiling joists and so had to move out for a month while it was repaired. What a time it was to be alive!) Downstairs was full of boxes but, thankfully, upstairs had been pretty much left untouched so we could at least show the social worker the girls’ lovely, newly decorated bedrooms because, obviously, nice bedrooms = kids not being abused. I know it’s a serious matter (trust me, this didn’t escape my attention) but I’ve got to have a sense of humour about it and, actually, the state of the childrens’ bedrooms is a factor taken into account by social workers so I was pleased we had something to show her. I digress. This was our first encounter with social care and, fortunately, this experience was not unpleasant. She listened to us and appeared to genuinely sympathise with our situation and the challenges we were up against. She told us that she could see we were doing all we could and she thought we were taking the right approaches. She signposted us to a local autism support network and suggested input from CAMHS. She chatted to the girls as well and can’t have had any real concerns because that was it from social care at that time. I was relieved but not surprised and I felt quite relaxed about the whole thing because I knew we hadn’t done anything wrong (the illusion of transparency). Upon re-reading this, I realise this comes across as insensitive towards Ben and his role as the supposed perpetrator. I say I felt quite relaxed but I do remember he and I worrying about how a disclosure like this (real or not) could affect his potential future career prospects and the work he did with a charity that benefits young people. Even though it was social care investigating us and hardly an ideal situation, it was, at least, someone paying attention. Bizarre at that may sound to some, others will get it.

So, this foray into the world of social care was, thankfully, short-lived but it wasn’t the last time we’d be referred unfortunately. In fact, about two weeks later, on a Tuesday morning, I received a call from school to tell me that P had disclosed having been hit over the weekend. She had spent the weekend with her sister, at their dad’s (they used to spend every other weekend with him but this arrangement stopped just over a year ago and, as with so many things, we’re not entirely sure why but could submit a few reasonable guesses – again, another post) and hadn’t said anything to us about anything unfavourable about their time there and I remember being especially surprised because the previous evening had been unusually calm and pleasant. This really worried me and I thought, ‘what if making these disclosures becomes P’s go-to; an immediate and particularly effective method of getting attention?’ What family could handle endless referrals and investigations from social care? Because the girls were, at that point, still open to social care, the social worker chatted to each of them at school and concluded that there was no need for further involvement. It was then about a year until we were thrown back to social care and that’s definitely a story for another time.

It’s hard to know where to stop (I’ll try my hardest not to say this at the end of every post but knowing when to stop is not my strong point) but I’ve answered my two ‘why’ questions so I will leave it there for now. I think my next post will carry on from here, in terms of covering the 2 years I refer to and, in case you’re wondering about the shit and the fan, I haven’t really touched on that yet.

Welcome…

Welcome to my blog. Writing a blog is an idea I’ve thrown around for a while and I’m excited to be getting started (almost as excited as I am to be sitting alone at my desk, with a cup of tea, on a Saturday). It’s the little things. My name is Hannah, I’m married to Ben and we have 3 children. The eldest two are my daughters from a previous relationship. I’ll refer to them as P and V. P is 11 and V is 8. And then we have E together. E is 21 months old. I’ll leave it there for introductions as all the other important bits I’ll slot in as and when.

P decided she would like to leave the house, and not wanting to discourage life outside of our four walls, here I am *at the park on a Saturday night, in the middle of winter.*

I’m going to jump straight in and say that the impetus for beginning blog-writing comes from my wish to document our attempt to help P with her eating disorder. She has, we believe – yet to be confirmed by the powers that be – anorexia and it is worth mentioning that she also has ASD (Autism Spectrum Disorder).

CAMHS (Child and Adolescent Mental Health Service) has offered us Family Therapy (FT) to help support P to recover from her eating disorder (ED from now on). During my appointment with the Family Therapist, I was asked how I thought FT could help us and, to be honest, I could have listed a few ways in which we would benefit from it – and, as you read my blog posts, you’ll begin to appreciate what I mean by this. However, he and I both agreed that the primary concern at the moment is P’s ED because, quite frankly, not eating properly can kill you. I had researched anorexia before this appointment and learned that FT is considered the most effective approach to treating EDs and so I was pleased and, actually, pleasantly surprised (again, as you read my blog posts you’ll appreciate my surprise) that this is what CAMHS is offering us. The therapy starts on the 22^nd March. It’ll be Ben, my mum and me as it is the three of us who are in the best positions to support P. My mum is very involved in P’s life, to the extent that, for the past year, P has slept at my parents’ house. Reasons behind this will become clear in future posts – or maybe they won’t, we’re not 100% clear of the reasons ourselves.

A side note – the Family Therapy approach to treating EDs is also known as the Maudsley Model (developed in the Maudsley Hospital – a prominent psychiatric institution based in London). CAMHS recommended I read ‘Skills-based Caring for a Loved One with an Eating Disorder’ by Treasure, Smith and Crane, which details the techniques and strategies intrinsic to this approach. I’ve not read it yet but, for anyone with a child in a similar position, I’m sure this book will be useful. The other book that was recommended to me, by CAMHS and another parent, is ‘Anorexia and Other Eating Disorders’ by Eva Musby. This one hasn’t arrived in the post yet. I have some long nights of reading ahead of me.

So, from this blog, you can expect to read about my experiences as we receive FT and try to implement the techniques and strategies at home. The type of thinking and behaviour inherent in anorexia is characteristically very similar to ASD and can be described as very rigid, rule-based and obsessive. So, you can imagine when you have a child with ASD (so, you can also throw other characteristics into the mix, such as incredibly high anxiety, extreme resistance, ‘black and white’ perspectives and a host of difficulties with social understanding and communication) and anorexia, the barriers to recovery can be expected to be tremendously robust. I was warned: it will be very difficult and there will be distress (on all parts, I’m sure but I think he was referring to P). When we deal with P’s distress, we’re often faced with things such as self-harm, suicide ideation, depressive mood, violent behaviour and more, so it’s distress with a capital ‘d’. Understandably, I’m very apprehensive about embarking on all this but there isn’t a choice. Having said that, I’m enormously grateful for the fact that I’m not the only adult to help P and we have a very supportive family network – I’m confident that the three of us attending the FT, as well as others in the family, will work together towards the best possible outcome for P.

Finally for now, in addition to detailing the ED-related journey, I plan to talk about lots of other aspects of parenting P, including the incessant fighting for support from a variety of different organisations. Writing this blog will be therapeutic for me but, ideally, its usefulness will extend to anyone who reads it, in terms of reducing feelings of isolation among parents of children with similar additional needs (I’ve realised: isolation is a big thing), signposting to potential sources of help/information and sharing the benefits of my experience (and I welcome the benefits of others’ experiences, too). Topics I intend to write about include: obtaining an EHCP (Education and Health Care Plan), working with schools and issues surrounding school attendance, engaging the help of CAMHS, financial benefits that might be able to help (Disability Living Allowance, Carers Allowance), self-harm, Social Care, the sense of isolation – from family and friends, problems with sleeping, separation anxiety, children who seek to control, social anxiety, different types of available advice and support (free and not-so-free) and more, I’m sure.

I’m grateful that you’ve taken the time to read my first post and I hope you’re interested to find out more.