Category: PDA

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).