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.

30 days of autism acceptance: day 24

Talk about the stereotypes and misconceptions that neurotypicals and allistics have. What stereotypes have you heard about autism? How do you respond to people who have incorrect stereotypes about autism? What kind of things should people not say to autistic people? What’s something you wish NTs/allistics knew about autism?

Honestly I’m not quite sure how to answer questions about stereotypes, as I’ve probably met as many autistic people with (to me) strange ideas about autism as I have non-autistic people. I also wouldn’t want to presume whether or not someone was autistic. I mean, before my diagnosis I would not have described myself as autistic, so anyone listening to me talking about autism might have assumed I wasn’t and ignored me because ‘NT opinions don’t matter’ or something. That’s an extreme way of illustrating it, but basically my point is that I don’t think it always makes sense to categorise people’s beliefs about autism based on whether they’re autistic or not.

I suppose this question is really asking about the kinds of assumptions made by people who know very little about autism (or think they know a lot about it, but don’t). There are quite a few general misconceptions I’m aware of – such as denying that people diagnosed with AS are autistic, thinking that ‘autistic people’ is a homogeneous category, thinking you can ‘grow out of it’, thinking ‘everyone’s a little bit autistic’, or the ‘silly’ things like thinking all autistic people have savant skills, are good at maths, etc.

There are all kinds of reasons these misconceptions might arise. Sometimes it’s just ignorance/lack of experience, where misconceptions are perhaps circulated in popular culture and not really questioned, or are actively pushed as an agenda (e.g. the anti-vaxx movement). I don’t think people mean to be rude or dismissive with some of the opinions they share, it’s just that they often haven’t had cause to directly interrogate their own assumptions! Yes, it would be nice if people were more self-reflective and if there was more widespread nuanced media, but it’s something I absolutely encourage – I suppose I say this to reassure myself, as much as anything, that it doesn’t make sense to take a lot of ‘throwaway’ misconceptions personally, as they’re often not intended that way (and if they are, it’s because the person/organisation is fundamentally mistaken about some aspect of autism).

I don’t know how widespread it is, but certainly in the research I’ve been reading, I get the impression that some misconceptions about autism are borne from a degree of arrogance – people’s misplaced confidence in their own ideas. Fortunately things do seem to be improving, but I’ve seen an awful lot of research on autistic people that kind of treats them like a ‘black box’ – assuming that because the researcher can’t make sense of their actions, there must be no sense. A case in point is the old diagnostic criteria that mentioned “inflexible adherence to nonfunctional routines or rituals” – how would they know those routines were nonfunctional? Just because they couldn’t see a function, certainly did not mean there wasn’t one! Lots of researchers are getting on board with listening to autistic people, bearing their thoughts and experiences in mind, and getting more out of the research they do as a result, but there’s a long way to go, and of course there has to be understanding from both sides (just because an autistic person describes their experience in a certain way, it doesn’t mean that this meaningfully correlates with what’s going on ‘under the hood’, so to speak, so researchers aren’t automatically wrong just because what they say doesn’t tally with the autistic person’s perception of what’s going on. People in general are poor judges of their own abilities, and folk psychology/neuroscience might be helpful in everyday life, but I don’t think it is for research purposes).

As far as correcting people goes, this is something I tend to do passively (by sharing resources) rather than actively (outright contradicting people). This is partially because I’m not very ‘open’ IRL, partly because I’m very rarely in situations that would call for it (which might be because I’m not very open! Maybe if I was, people would come to me with random questions or opinions about autism more). I only really talk about autism in the context of monologues like these blog posts, or discussions with people who already know quite a lot, where we discuss quite fine details that are often more a case of interpretation than absolute right-vs-wrong. In fact, I think that’s one of the things that puts me off ‘sticking my neck out’ when someone brings up a misconception or something like that: the arguments I’ve seen people have are often very black and white, which I think usually misrepresents the situation – there are usually reasons for people having their opinions, even if those opinions are not themselves accurate. However, my experience is that (especially if they’re starting from a position of not much knowledge) people generally don’t like the ‘shades of grey’ approach. This is, in itself, a black-and-white way of casting the issue! – I suppose I just don’t usually want to run the risk of putting myself in the middle of an argument and getting flak from both sides.

As far as things I wish people knew goes – I think I would just want to encourage people not to make assumptions, and not to assume they know best just because what someone’s saying doesn’t immediately mesh with their prior understanding. That’s a very general point though, that’s by no means limited to people’s understanding of autism! On a personal level, I really wish people wouldn’t uncritically use ‘autistic’ as an insult. As I’ve mentioned, I can usually rationalise my way out of taking ignorant, half-formed opinions personally, but that’s something that really gets to me. It combines the worst of both worlds as far as I’m concerned – misconceptions about autism being inherently negative (whatever they happen to think is negative about it) and a complete lack of self-consciousness about where those opinions have come from and whether or not they’re accurate.

30 days of autism acceptance: day 23

Talk about your living situation. Where do you live? Do you live alone or with other people? Are you happy with your current living arrangements?

I actually have two very different living situations at the moment – home and university. Both are a bit of a weird, sort-of-independent-sort-of-not thing.

At university, I live in a “College hostel” – basically a cross between a student house and Halls. It’s the best of both worlds, really. Unlike College’s Halls, I only share the building with six other people, live in a quiet part of town away from the centre, and we have our own garden and communal areas. However, as it’s College-owned and maintained, there’s a housekeeper who comes in every day to clean the communal areas, and College are responsible for all upkeep, utilities, etc. – we just pay a single termly amount to College for rent and all utilities, pay for a certain number of evening meals in College per term, things like that. It suits me quite well, really – I would not get on with a ‘typical’ student house at all as I really cannot tolerate… other people, really. I’d have trouble negotiating bills and things (and get stressed about other people not holding up their end of the bargain), and people being untidy/unclean/inconsiderate gets to me in a huge way. At least us having a housekeeper means the kitchen and bathroom are cleaned daily, because the people I live with have a very… relaxed attitude to cleaning up after themselves. I won’t go into it, because this prompt isn’t meant to be a rant about housemates, but honestly if I’d ever had to live in student accommodation that College weren’t hands-on with, I don’t think I would have lasted a term.

Location-wise, I think I prefer university to home: living a 20 minute walk from the centre of such a small city is ideal really, as I can get pretty much everywhere in around a 3 mile radius under my own steam. At home, I usually rely on family as I don’t drive (and don’t plan to any time soon – it sounds terrifying). Living four miles from the nearest town is a bit of a pain – the bus service is very limited, and I’m only brave enough to get the bus from home to either that town or the train station in the other direction by myself. Fortunately I’m fine with trains, so if I can get to a train station I can get pretty much anywhere, but I don’t enjoy buses at all. At least at uni everything I need is less than an hour’s walk away, and because it’s a small city there are less than a dozen bus routes (only three of which I ever have any use for), but they run early mornings/late nights and on Sundays. I’m also an easy train journey from pretty much everywhere. Cambridge is quite unusual for a city, too, in that big green spaces are so accessible – I think I’d find it more difficult living somewhere busier/more built up.

At home, location issues aside, I’m fairly lucky: I live with my parents and sister, but have my own living room/study and bedroom in an annexe at the back of the house. Again, best of both worlds – I have my own space that I have a fair amount of control over, but am not isolated or in charge of day-to-day stuff like cleaning, laundry, cooking, etc. In fairness,  I don’t have too much problem doing those things for myself in principle, and think I would find them easier in an environment I had full control over (so wasn’t stressing about other people being in the kitchen or leaving it unusable, or having to remember to keep checking for the washing machine to be free), but I definitely eat more ‘proper’ food, and more regularly, when other people are in charge of it, for instance.

All in all, I think the best living situation for me would be a combination of these two situations: living semi-independently with family in a location that made that more possible than it currently is. I would definitely not choose to share a house or flat with anyone other than my family – or a couple of other people whose cleanliness and considerateness I trust. I wouldn’t mind living on my own, but am not convinced it would be good for me… my sister has always joked that when she and her boyfriend move out, she’d pick a house that could have a ‘James room’ – though it’s (probably) mostly a joke, I think we both recognise that that arrangement would suit me well!

30 days of autism acceptance: day 22

Talk about autism parents. How do you feel about this section of the community? Do you feel as if they speak over you? Do you find the term ‘autism parent’ rude or offensive?

I don’t have much of an opinion on this worth sharing, as my contact with ‘autism parents’ as a community is virtually nonexistent. I have of course seen some of the foul attitudes expressed by some people who call themselves autism parents, but I don’t have much of a sense of the community as a whole, and have never (to my knowledge) interacted directly with anyone who’s a part of it, so they’ve never had an opportunity to ‘speak over me’.

I do have some experience with people whose information about autistic people seems to be very limited, but nobody who thinks that they know more than I do, or seems unwilling to listen to alternative perspectives (which I gather is the issue a lot of people have with so-called ‘autism parents’).

As far as the term itself goes… I suppose I find it misguided, more than anything. I know it’s colloquially used to refer to nonautistic parents of autistic children, and seems to be generally associated with said parents sharing intimate details of their children’s lives and behaviours, expressing how hard it is to be a parent of an autistic child, peddling ‘autism has locked my child away’ rhetoric, things like that. I’m not sure how representative that portrayal is, and won’t say anything about it because I’m simply not qualified. I will say that I think the implication that these people are parents to ‘an autism’ rather than ‘a child’ a bit odd. While there are lots of good reasons to avoid language that separates the person from the autism,  I suppose I find the insistence on putting the autism at the forefront of the description dehumanising in this instance. I also think the phrasing implies an unwarranted expertise/access to the experience of being autistic.

A short one today!

30 days of autism acceptance: day 21

Talk about comorbid conditions. Do you have any other disorders commonly related to autism? Were you misdiagnosed as something else first?

I have a few other diagnoses, and a couple of queries, but I think the difficulty in these situations is always going to be that autism has symptom overlap with a lot of things, so working out what’s separately diagnosable, and which symptoms to match up to which diagnosis, isn’t easy. With my philosophy of cognitive science hat on, I have reservations about the extent to which diagnoses commonly considered comorbid are actually separate conditions, but recognise that for practical purposes it can often be helpful for multiple diagnoses to be specified in order to make it clear that there are significant difficulties in functioning in the area commonly associated with that diagnosis.

My main diagnoses other than autism are spina bifida, a hearing impairment, visual stress, depression, and anxiety. Whether they can be conceptualised as commonly related to autism is an open question. As far as I know, there is evidence that all of these conditions occur more frequently in autistic people than would be expected by chance – or perhaps autism is diagnosed more frequently in people with these conditions; I don’t think it’s clear which way round we should think about the correlation. There’s also the issue of whether diagnoses are best understood as… primary or secondary to the autism, I suppose. For instance, obviously lots of people have mental health conditions without being autistic, but I don’t think it’s clear that mental health problems in autistic people are, as a general rule, independent of their being autistic or not. I mean, it seems obvious that an autistic person trying to get by in an environment which is actively detrimental to things like their self esteem as a direct result of difficulties related to autism is at greater risk of developing mental health problems in response, but as far as I know, there’s no particular reason to believe that this must be why autistic people develop (certain) mental health problems.

Similarly, I know of research suggesting spina bifida and autism might emerge congenitally through shared genetic mechanisms. The research is very tentative as far as I know, and I don’t think it’s been carried out in humans so should absolutely be taken with a pinch of salt, but it’s interesting to think about and emphasises how widespread the effects of genetic changes can be.

I don’t know of any research specifically addressing visual stress and autism, but I understand it’s been looked at in the context of sensory processing.

Finally, on the subject of my hearing impairment – I know autistic people are fairly often thought of as having a hearing impairment when younger, when the problem might be at the processing rather than the input level (to put it simply). It so happens that I have a hearing impairment at the input level, in that I have no hearing in my right ear at all. This was most likely caused by a series of seizures I had as a baby that damaged my auditory nerve – they think I lost my hearing before the age of ten months. It makes it difficult to separate out hearing and speech problems that might be related to central processing, more commonly associated with autism (and it’s also unclear whether early disruption of sensory input can in itself affect central processing, as seems to happen with vision!). Though there is research that suggests people who lose their hearing before developing language can have language and social problems that look similar to autism, as far as I know that research has only been in people with more severe hearing loss than mine, so it might be that the finding is completely irrelevant to my own development. Indeed, the clinician who diagnosed me with autism didn’t seem concerned that my hearing impairment complicated the clinical picture, and she was quite happy to attribute my difficulties with filtering noises and things to a central auditory processing issue. Whether this is actually the case I suppose I’ll never know, as I can’t think of any particular reason I’d need my hearing tested again – my impairment is very well established, I don’t need any more evidence for it or anything like that. Even if I was to be tested for central auditory processing issues and found to have them, I’m not sure whether they would be able to confirm whether this was a result of early loss of sensory input, part of a constellation of neuronal changes related to autism, or both, or neither.

I have had clinicians in the past suggest various other conditions, including epilepsy and bipolar, but I don’t think there’s good reason to believe they apply to me (e.g. I haven’t had any seizures in nearly 20 years, and while bipolar might actually be a better ‘fit’ than depression, I don’t have the adverse reaction to antidepressant medication that lots of people with bipolar seem to experience). I was diagnosed with selective mutism when I was about 4, as I think I’ve mentioned in previous posts, but the jury is out as to whether that was an accurate diagnosis. I mean, it certainly described me accurately, but whether it was ‘just’ anxiety in addition to an excessively literal interpretation of my parents’ instructions not to speak to strangers isn’t clear (indeed, it’s not clear that that explanation would mean that it wasn’t selective mutism… though it’s now not diagnosed if the person is known to be autistic, I know (of) quite a few people who had SM diagnosed in childhood and were later diagnosed with autism).

I have wondered about BPD in the past but rejected the possibility. I’ve also wondered about ADHD as I have particular issues with inattention/distractability and impulsivity, but am not sure whether those issues are separable from the autism diagnosis – the same goes for AvPD (and honestly I’ve had enough difficulty adjusting to the whole autism thing that I’m really not keen to pursue anything else that I’ll just end up agonising over).