Category: sen

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.