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).