30 days of autism acceptance: day 30

Talk with pride. Are you proud to be autistic? How do you show the world your pride?

I’ve been musing over this for quite a while, thinking about how I understand ‘pride’. When you look up the definition, you get told that pride is “a feeling of deep pleasure or satisfaction derived from one’s own achievements… or from qualities or possessions that are widely admired.” I’m not sure it makes sense to think about being autistic rigidly in those terms, but I do think it makes sense to think about pride, here, as an alternative to shame.

Shame is absolutely something I struggle with – not just in relation to my autism diagnosis, but in all kinds of contexts. I am often violently overcome by a sense of being wrong, being not good enough. In the case of autism, I hoped that getting a formal diagnosis would alleviate that sense at least a little, but if anything I think it’s become worse over the past year or two. Rather than being able to throw my mental energy at the bureaucracy involved in securing an assessment, I’ve had to try to come to terms with the fact I have been diagnosed, that this is something others consider a ‘fact’ about me, that the things I find difficult are not necessarily ‘my fault’. I still find it excruciating when people act as though I have a right to be accommodated for things I find difficult, or generally have positive things to say about me, because I feel like I’m systematically misleading them, and at any moment they’re going to see what I see.

While a large part of myself fundamentally believes that all that I am is not enough, this “30 days of autism acceptance” challenge has been in large part an attempt to combat that belief. I suppose I could have called it “30 days of autism self-acceptance”, really. Whether it’s worked it would perhaps be premature of me to say. Without being melodramatic about it, I have a lot of self-loathing to unlearn, and a couple of months of sporadic blog posts are not some kind of panacea for that.

That said, this project has given me an opportunity to discuss a lot of aspects of autism in a space that’s reasonably distant from my usual internet presence, with all the baggage that can generate. I have made a concerted effort not to apologise for all that I am and all that I think, and not to pre-empt criticism by getting defensive or dismissing myself. It’s been quite a selfish project in a lot of ways, but I think I needed it – both to work through it in the first place, and to make it available for others to read, to ‘put myself out there’, as it were. I’ve found openness a good antidote to shame in other areas of my life, and though I’m finding my autism diagnosis far more difficult to be open about IRL – it’s far more fundamental to who I am, I suppose – I have been taking steps to make it an ‘open secret’, I suppose.

To me, to have a sense of pride in oneself is to positively assert some aspect of one’s identity, to not feel that it (or you) are fundamentally wrong. I suppose a significant step would be to say something along the lines of “I am autistic and I’m ok with that.” I’m phrasing it as a hypothetical at the moment, as this still feels like a difficult step. Maybe it’s time to take that step – maybe taking it will reveal to me that it’s really not as big a deal as I’m making it out to be in my head.

It’s an issue I’m having to tackle head-on at the moment, as I’m in the process of starting a new job and working out how to disclose my diagnosis. I’ve previously only disclosed in certain online spaces, or IRL when directly asked or when it’s been directly relevant in a medical or support context. I have a meeting on Wednesday where I plan to ‘come out’ to HR and discuss how best to disclose to my new manager (honestly, she may already know, but I have no way of knowing and need to talk to her about it for various practical reasons). I’m shit-scared, but I expect it won’t be anything like as bad as I’m imagining.

Anyway, the point of the above paragraph in particular, and this post in general, has been to talk a little bit about my motivations for embarking on this project and whether I think I’ve succeeded in reducing my sense of shame. I don’t think I’ve progressed hugely, and I think my progress is rather flimsy at the moment, but I do think this has been a helpful first step.

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30 days of autism acceptance: day 29

Talk about executive functioning. Do you experience executive dysfunction? How do you deal with it?

So, executive (dys)function is a very broad concept. I won’t bother recounting all the things that are commonly described as executive functions, as those kinds of lists and discussions are readily available online (e.g. here, here, and here), but I will comment that some difficulties with executive function seem to be common in a number of psychiatric and developmental conditions – and that having difficulty with one or several of these ‘functions’ doesn’t at all mean that someone will have difficulty with all of them. That means that I don’t think it’s all that meaningful to ask whether someone has difficulties with executive function in general: there are lots of different things people might struggle with that fall under the umbrella of executive dysfunction, and they often need to be dealt with differently.

One thing that interests me about executive dysfunction in autism is that it’s often colloquially talked about as though it’s just one part of autism, and is a kind of explanatory system that can be used alongside other cognitive theories (such as theory of mind). However, these cognitive theories were originally posited as a way of explaining autism in its entirety, and that seems to get lost in translation between cognitive science research and autistic people talking about their own experiences.* I’m not in any position to talk about the relative merits of these theories and how much overlap there is between them, but I think the issue in general indicates the possibility that, when people adopt the language of cognitive science theories to describe difficulties, they may be using it ‘incorrectly’ due to lack of clear communication from researchers about how these theories translate to everyday life for autistic people.

As I’ve said many times in previous posts, I’m not keen on rattling off a ‘laundry list’ of the symptoms I experience, and I won’t do that here. What I will say is that I think it can be very helpful to conceptualise difficulties in terms of executive dysfunction sometimes. Firstly, it can sort of exonerate you from moral responsibility – e.g. if you’re often accused of being lazy or careless, it can help to remind yourself and others that you’re not deliberately doing/not doing things. Secondly, it gives you a framework for understanding and tackling problems. To give a personal example: I’m learning that if I struggle to get started with tasks, it’s not because I’m just Not Good Enough, but because I often have to explicitly work out the steps that are required or what I actually need to do, can’t easily ‘switch off’ from what I’m already doing, and things like that. Conceptualising difficulties in that way leads to dealing with them far more productively: rather than beating myself up over not doing whatever needs to be done, wasting time and emotional energy, I can devote my attention to dealing with the actual obstacles.

It’s actually been very valuable to have some sort of self-awareness of my difficulties with organisation, planning, and so forth, over the past year. As this year at uni has involved a great deal of self-motivated study, and several long pieces of coursework, coming into the year knowing that I struggle with things like lack of structure or explicit directions has been helpful. It’s given me the language to explain things to people so that we can pre-empt/plan for problems as far as possible, and it’s allowed me to not beat myself up so much when things go wrong, as they invariably do. For instance, the most consistent feedback I’ve had from my coursework supervisors over this year is that my ideas are good but my structure is terrible (I mean, they’re diplomatic about it, but…). However, they’ve all had copies of my student support document, which explains my diagnoses and acknowledges that I have difficulties with things like planning/organising my thoughts and workflow. How they’ve acknowledged that and helped me with these things (and been patient with my endless rambling in supervisions…) has reassured me that they don’t just think I’m not good/clever enough. While accepting that these are things I’m ‘allowed’ to struggle with is definitely an ongoing process, and I still often feel like I’m just making excuses, I’m starting to be able to cut myself a bit more slack with these things, as well.

*There’s an article here that gives an overview of executive dysfunction as a theory of autism (as well as the two other common theories, which are theory of mind and weak central coherence), for anyone interested in reading a bit more about the actual research that gives rise to these theories and causes them to develop.

 

[I’ve nearly finished the 30 days of autism acceptance series]

This is just a quick one! I only have one more blog post to write for the autism acceptance series (the penultimate one is queued for later this morning, and I will probably write and post the final one tomorrow). I’ve actually enjoyed the process of thinking and writing about all these topics, so I was wondering if anybody who happens to be reading this is aware of any other blogging prompts/challenges/series? If so, I’d be interested to hear about them, as I’d quite like to continue writing, and perhaps contribute something other than the mainly introspective stuff I’ve shared so far, but I’m not sure where to start with looking for inspiration.

30 days of autism acceptance: day 28

First of all: I took an unexpected break from this series, I’m afraid! Feeling guilty about doing anything other than working on my dissertation wasn’t conducive to writing, and I had some complicated (and mostly tangential) thoughts on this question that I needed to mentally tease out. But! – my dissertation was handed in last week, and I’ve just about caught up with the things I neglected in the weeks before the deadline. So without further ado….

Talk about autism as a disability. Do you think autism is a disability or a difference? Or both? Do you feel more disabled by society than by your autism?

The short answer is that it can be both.
The long answer is also that it can be both, but that in my opinion, the multiple ways in which both words are used can make that obscure.
Firstly, ‘disability’ seems to mean different things to different people. The Equality Act (2010) suggests that someone is considered to have a disability if:

  • They have a physical or mental impairment.
  • The impairment has a substantial and long-term adverse effect on their ability to perform normal day-to-day activities.

Some people seem to prioritise the first point, more or less equating disability with the organic features of a condition (e.g. a deaf person is disabled simply because they can’t hear). Others emphasise the role the social world plays in generating difficulties for people considered disabled (e.g. that same deaf person is disabled, at least in part, because they don’t have access to subtitles or sign language interpreters, for instance). I’m not going to go into detail on the different ‘models’ of disability here, but I think it’s important to think about it in the context of autism, because it absolutely affects whether people think of autism as a disability or not.

Those who equate disability with the organic features of a condition tend to think of words like ‘disability’, ‘disorder’, and ‘dysfunction’ as more or less interchangeable, but it’s not as simple as that. For instance, I know of one paper where the authors seem to think that autism can be understood as either disability or difference, but not both. They claim that proponents of the neurodiversity movement want autism to be understood as a difference instead of a disability. This seems to be a misunderstanding on their part: the neurodiversity movement objects to characterising autism in terms of disorders or deficits, but generally has no problem with understanding it as a disability. This is because it thinks of disability as the social problems generated by the ‘differences’ that characterise autism.

Some people seem to think that calling autism a disability is offensive. Again, this only really makes sense if you’re taking a strongly biomedical approach to what disability is. It seems like the authors of the paper I linked to above think they are being sympathetic to the neurodiversity movement when they divide autistic people up into ‘high-‘ and ‘low-functioning’, and then claim that only ‘low-functioning’ people should be described as disabled, but as far as I’m concerned they’re missing the point (and making an essentially arbitrary distinction as regards ‘functioning’, but that’s a separate issue). They recognise that saying people have a ‘disorder’ because of a lack of social accommodations is essentially blaming the victim, but seem to apply that reasoning to the term ‘disability’ as well. Given that ‘disability’ is a really important concept in a legal context, I think it’s at best premature of them to claim ‘high functioning’ autistic people shouldn’t count as disabled, but it also betrays an ignorance of the neutrality of the term ‘disability’ as compared to ‘disorder’ (at least, as far as I’m concerned).

The idea of ‘autism as difference’ can also be understood in a couple of ways. The first of these is the very literal claim that autistic people are different from non-autistic people at the neurological and/or cognitive and/or behavioural level. Now obviously, autistic people are different on the behavioural level: that’s how autism is diagnosed! Nowadays there are a lot of people working in the cognitive sciences who are trying to find the neurological/cognitive differences that underlie those behavioural differences. There’s a lot of data out there, but the field as a whole is relatively inconclusive at the moment.

The second sense in which people talk about ‘autism as difference’ builds on the first sense: the claim is basically that differences in autism (at any level) should be described as differences rather than as deficits, or dysfunctions, or other words that imply there is a ‘right’ way for people to be, and that autistic people Are Not It. This is basically the claim of the neurodiversity moment, and there’s actually a growing number of researchers who are advocating for avoiding value-laden terms like these, and instead re-framing what is thought of as normal or acceptable (a very recent example is Simon Baron-Cohen’s editorial on the concept of neurodiversity).

Unfortunately, as I’ve already pointed out, even those who claim to be sympathetic to the neurodiversity understanding of autism sometimes do so with the caveat that it only ‘really’ applies to certain ‘types’ of autistic people. The message is often that the kinds of autistic people whose differences are ‘neutral’ differences are ‘high-functioning’; aren’t ‘really’ disabled, etc.. Sometimes the message is implied; often it is quite explicit. This is why it’s really important that researchers make it clear how they understand terms such as ‘difference’ and ‘disability’: so many misunderstandings and disagreements seem to hinge on different interpretations of these terms.

All this aside, I realise the prompt was asking for what thought. Honestly, though, I don’t have a completely settled opinion. I’m absolutely in favour of understanding autism as a difference (or differences) at an abstract level, though I’m not keen on the literal claims about autistic people being ‘wired differently’. I also don’t think it’s at all inconsistent to describe autism as both difference and disability, because I think it’s really important to recognise that disability is not straightforwardly a product of organic differences, and that the environment plays a role in ‘constructing’ disability. What I’m not sure about is whether autism is necessarily a disability, and my thoughts on this are too complicated to untangle here.

30 days of autism acceptance: day 27

Talk about eye-contact. Do you make eye-contact? Why or why not? Does it make you uncomfortable?

I sometimes feel as though I have a different perspective on this to other people I see writing about eye contact. This is mainly because I see an awful lot of people talking about making an effort to look like they’re making eye contact without actually doing so, and talking about how much they dislike it, things like that. For a long time this didn’t make sense to me – it sounded as though people were deliberately looking/not looking at people’s eyes. I realised fairly recently that perhaps I’m just lucky that very few people in my life have made a big deal about the amount of eye contact I make, either to ‘tell me off’, or otherwise make me feel self-conscious about it.

To actually address the prompt – I don’t think I make eye contact – or if I do, it’s little more than incidental. I’m not sure exactly why this is. As I can’t think about making eye contact and doing whatever else I’m doing (e.g. talking or listening) at the same time, it’s not something that I think about unless someone makes a point of mentioning it, which is why I didn’t understand the way other people were talking about it – I don’t deliberately avoid it day-to-day, it just happens that my eyes seem to do their own thing, and that ‘thing’ doesn’t involve orienting to other people’s eyes. I doubt I could ‘fake’ eye contact, either, for the same reason – if I’m having to put my energy into keeping my eyes in one place, I’m not going to be able to concentrate on whatever else it is that’s going on. The main exception to that would probably be watching people’s lips, as if I can’t hear them very well I have to concentrate on trying to lip-read instead (but again, I think as soon as I went to reply I would pretty much lose control over what my eyes were doing).

I haven’t had an awful lot of direct feedback on my eye contact, oddly enough. I can only remember it coming up once in school, when one of my teachers first found out I was being assessed, and for some reason came up to me and tried to force me to look her in the eye. The guy I saw for CBT a couple of years ago made a point of mentioning it when we were doing a video recording thing (he was recording us talking and getting me to watch it back and identify signs of ‘social anxiety’). The psychologist at my last assessment got to the question about eye contact, and just laughed and moved on without asking for a response, which I suppose is a fairly decisive indictment of my lack of eye contact.

Having said all that, the lack of feedback actually makes me curious. As I’m not really paying attention to what my eyes are doing, I only tend to find out through what other people think. Obviously I’ve constructed this theory as to what’s going on with my gaze, but I suppose it’s possible that I could be completely wrong and actually, in at least some circumstances, my eye contact appears good. Perhaps I should ask some people for their opinions.

Speculation aside – I think I said that I’m not sure exactly why it is that I don’t (deliberately?) make eye contact. Certainly, I tend to become uncomfortable when made aware of it, but I don’t know if that’s just self-consciousness or not, and maybe it’s easier to look at someone’s eyes of my own volition than to try to ‘perform’ under pressure. The time(s? I’m sure there has been more than one, but the episode with the teacher is the only one that springs to mind just now) I’ve been under pressure to make eye contact, it’s been quite an odd sensation. While I can’t be certain this is an accurate explanation of what it felt like at the time, in retrospect, I think of it as though I’m looking down a cardboard tube with someone’s eye at the other end – but ramming the tube quite hard into my eye socket whilst doing so.

In short – in the past, I’ve found the huge amount of discussion of eye contact in autistic circles difficult to understand. While lots of people seemed to be expressing confusion over non-autistic people’s apparent obsession with eye contact, I was a bit bemused at this apparent obsession with what non-autistic people think about eye contact. I now think it’s likely that I’ve just got off lightly in terms of being called rude or forced to make eye contact.

30 days of autism acceptance: day 26

Talk about echolalia and scripting. Do you use echolalia? What about scripting?

I have to say I’ve never really given this much thought, and don’t know a lot about it. It wasn’t asked about in my assessment either, as far as I remember. I suppose I probably do, though – though not exactly deliberately. Though I’ve said in previous posts that I’m generally not one to present ‘laundry lists’ of phenomena (like examples of symptoms), I think this post might come across as a bit of an exception to that: as I say, I don’t know much about this, so my putting down things that might be relevant is a way of sorting it out in my own brain. It might be interesting to get other people’s opinions as to whether I’ve understood the terms correctly, too. Certainly I’ve see the term ‘echolalia’ mobilised to describe all sorts of things, from repeating questions back to the speaker to quoting films, and as far as scripting goes I’m never quite sure if people are talking about deliberate ‘rehearsal’, or having a stock reply to common questions, or both, or neither.

As far as echolalia goes (or at least, my understanding of it) – I don’t think I immediately repeat other people’s words very often. Maybe I repeat people’s questions back to them a fair bit, but I don’t know if that’s an echolalia thing or a ‘processing’ thing (perhaps both -or neither!). I definitely echo sounds in the environment very often (things like cars and birds, usually). I also repeat things like quotes in the context of talking to people – I’m not sure if this would count as a kind of ‘delayed’ echolalia or scripting, but I’m sometimes quite painfully aware of it because people tell me that the phrase makes no sense in that context.

I very often repeat my own words to myself, but I don’t know if that ‘counts’. It’s usually after I’ve been thrust into some unexpected situation where I’ve had to speak to someone, and I’ll repeat my own words over and over for some time afterwards. Since it’s usually in public, if I catch myself doing it I try to stop, but it can start up again if I don’t concentrate on suppressing the urge.

As I say, I’m not 100% sure what people mean when they say ‘scripting’. Two possibilities spring to mind – firstly, rehearsal of a ‘script’ for a specific situation (e.g. planning what you’re going to order at a takeaway, or when you go up to a helpdesk). While I do rehearse in contexts like that, I actually don’t seem to do it as often as other people I know – e.g. my sister, who is not autistic but is very anxious. I think this is partially because I’m not as good at handling deviations from ‘the script’, As far as I know, it’s very common for over-rehearsal to make it more difficult to deal with things going wrong, but I seem to have a lower threshold for dealing with that than some people I know. Also rehearsing often makes me more wound up – depending on the situation, I might prefer to distract myself for as long as possible, and then muddle through the interaction as required.

The other sense of ‘scripting’ I can think of is having a repertoire of stock phrases/responses to certain types of question (which may, I suppose, be deliberately curated, and may cross over with the phenomenon of echolalia in some sense). This is definitely something I experience, and wish I didn’t  – my stock phrases tend to come out more or less automatically and it irritates me to no end, because often they won’t be what I want to say (either at the time, or in retrospect). I’m very self-conscious of the fact my responses are often repetitive or impersonal, but am yet to find a way to stop myself blurting them out.

30 days of autism acceptance: day 25

Talk about meltdowns/shutdowns. Do you have them? How often? What are your triggers?

I can think of a handful of times I’ve experienced something that might look like a meltdown. I very, very rarely externalise anything, and can only think of two occasions in my entire life where I’ve physically ‘lost control’ (of course, there may be more, but they’re unusual enough for me that I think I would probably remember). Both of those were in response to being overwhelmed and unable to do anything about it – either I physically couldn’t get away from the situation, or it built too quickly for me to be aware of it in time to escape. They were really awful, for the attention they drew afterwards as much as anything else.

I’m much more prone to ‘shutdown’ – or at least, I think I am: I’m not absolutely clear on the difference between shutdown and dissociation (if there is one, I think it’s more likely to be down to the type of trigger than anything else). As a kid and teenager, I would take myself away somewhere dark and quiet, like a cupboard or wardrobe, but nowadays when I’m overwhelmed and need to escape I’m less picky about location – anywhere quiet and empty will do. If I can’t escape I’ll go blank and stop responding, or be very terse – people usually think I’m in a mood and might get quite snappy with me, which usually makes it worse. It’s a mixed blessing that when I get to this stage I get quite numb to the world around me, in that it’s not really a problem for me when I’m on my own and this happens. It’s part of the reason I actively prefer to travel/go to crowded places on my own, because if I’m with people I have the added pressure of direct social interaction, having to be aware of their own movements as well as my own, things like that – more information to take in, less ability to just ‘go with’ the experience. Fortunately there are a few people who I can tolerate quite well in these situations – who are less likely to get irritated with me and don’t mind leaving me to my own devices – but often I will try and push myself through this stuff out of embarrassment as much as anything else.

I have recently been starting to wonder if some of the ‘crisis’ experiences I’ve had can be understood as meltdowns, of the… implosive, rather than explosive variety, I suppose. My most recent visit to A&E was because I was very much mentally out of control – I couldn’t rein in the negative thoughts and frustration I was experiencing, and I couldn’t engage with anyone or really do anything to help myself by that point. While I thought I probably seemed alright on the surface and was quite sure I’d just be sent straight home again, the doctors described me as extremely agitated and wouldn’t let me leave as they thought I was a danger to myself. That came as quite a surprise to me at the time, as I didn’t think I was doing anything particularly out of the ordinary, but I suppose I didn’t have an awful lot of awareness of myself. That’s what makes me think the episode could be described as a kind of meltdown, as I think I lost control in a similar way, even if it didn’t look or feel quite the same as the external-rage-type meltdowns I described earlier.

The frequency of all of these episodes varies quite a bit. As I say, the ‘traditional’ meltdown type scenario is exceptionally rare. The shutdowns can be much more frequent, depending on what’s going on – probably at least several times a week to varying degrees, and more if I have to spend a lot of time with people, or am otherwise tired or overwhelmed. The ’emotional’ meltdowns are the most variable, but as they’re the most potentially dangerous I’ve put quite a lot of work into trying to be aware of when I’m particularly ‘at risk’, as well as trying to manage my day-to-day life so I don’t get to that point.

I don’t think there’s a lot of point to going through all the potential triggers, because I (a) don’t think it would be possible to generate an exhaustive list, and (b) have enough implicit awareness of them that I don’t see any personal benefit to doing so. Lots of other people have generated lists of potential triggers, too, so my addition would basically be a drop in the ocean at this point. That said, I can say that they are almost always down to being overwhelmed – by the environment, or by uncertainty, or my own thoughts and sensations.