30 days of autism acceptance: day 16

Talk about treatment. Have you been through any therapies? What ones did you like? Which ones didn’t you like? Do you think autistic people need therapy for their autism?

This is another prompt I don’t have a huge amount to talk about.

I’ve not had any specifically autism-related therapy/”treatment”, though I’ve been in and out of various psychological services since the age of 4. I won’t go into the details as it’s neither relevant nor particularly interesting, but I will note that a lot of it wasn’t all that helpful, partially because of my difficulty building a rapport with practitioners and expressing myself. I’ve been frequently misunderstood (not to be too melodramatic about it) and had a fair amount of trouble with being bounced around between different services. In contrast to a lot of autistic people I hear from, I probably found the CBT I had a few years ago more useful than anything else. That might be in part because he was the first person to explicitly take on board the possibility of my being autistic (I wasn’t diagnosed at the time), partly because we did actually ‘click’ quite well, and partly because CBT is very, very structured and practical. While I had difficulty with some aspects of the procedure, in general I found it much easier to get on with than some of the ‘talking therapies’ I’d been sent to in the past.

Outside of a medical context, though still relevant here I think, I have a specialist mentor at university, who helps with planning/organisation, structure, and managing anxiety and social demands. I would be absolutely lost without the structure she provides, I think – I’m fairly sure she’s the sole reason I managed to finish my degree and move onto the MSc I’m currently doing. I also use a service called Brain in Hand, which helps with real-time anxiety management and problem-solving. Together with the CBT I mentioned above, I think these practical approaches have been far more helpful to me than the rather abstract, difficult-to-apply therapies I’ve had in the past.

I don’t think I have any right or ability to make a general statement about whether autistic people need therapy for their autism. I think it’s interesting that this prompt seems to conflate ‘therapy’ and ‘treatment’, though: as far as I’m concerned, these things are quite different. To treat something implies ‘removing’ it, which doesn’t really make sense in the context of autism unless you happen to believe it’s possible to cure it (I don’t). However, therapy is more about managing difficult situations than ‘curing’ the underlying cause, at least to my mind, and I think it’s perfectly consistent for someone to subscribe to the neurodiversity paradigm (autism-as-neutral-difference) whilst still being in favour of autistic people engaging in therapy to help them cope with things they find difficult. Of course, there are lots of things imposed on autistic people in the name of ‘therapy’ which are pretty brutal, and don’t deserve to be sanitised with the title ‘therapy’ at all, but I certainly hope that over time, increasing representation of autistic people’s concerns within research will help focus attention on what benefits autistic people, as opposed to those around them.

30 days of autism acceptance: day 15

Talk about identity. How do you identify? Autistic? Asperger’s? Person with Autism? What’s your take on person/identity first language?

This partially depends on context. If I’m having to explicitly identify myself to someone, I usually say “I have been diagnosed with autism”, for various reasons that I’ve mostly talked about before and won’t bore you by revisiting. If, for some reason, I’m being asked to position myself on one side of the autism/Asperger’s divide, then I would always choose the former over the latter.

I have pondered this divide, and my feelings about it, quite a lot. On one level my response is factual: my diagnosis is autism, not AS. On another level, I don’t think this is the full story, and I find it interesting to reflect on how my opinion has changed over the years. I was reading back some of my writing from a couple of years ago recently, and was surprised to find that I had no apparent problem aligning myself with AS-related terminology back then (nor did I have any problem doing so as a teenager, when I was first being assessed). I knew a lot less back then, both about diagnostic categories and myself, didn’t engage with any autistic ‘communities, and had only really come across people talking about AS, so didn’t have much understanding of how the various labels were deployed. It was only when I was diagnosed with childhood autism rather than AS that I (a) started to pay more attention to the ‘community’, and (b) looked into the different labels in more detail. It was then that I started to learn more about the community’s general issue with ‘functioning labels’, too.

I think the topic of functioning labels is coming up in a  few days’ time so I won’t expand on that here, except to say that I think my unease with AS terminology is due to concern that other people might make assumptions. For instance, at my university, the disability resource centre talks exclusively about Asperger’s, and that’s what is written on my student support document. It really bothers me, and I think I try to convince myself it’s primarily because of its inaccuracy, but I suspect there’s a degree to which (a) I’m insecure about my own diagnosis, and (b) I’m a bit oversensitive about any suggestion that people might be making assumptions about me, or what I ‘should’ be able to do. That second issue goes both ways – I worry that I seem to do poorly at uni compared to other autistic students and people might think I’m simply not trying hard enough, as well as being concerned that I don’t ‘deserve’ the autism label, as though I clearly don’t have it as tough as others and so must be making it all up. This definitely all goes back to internalised ideas about AS being ‘autism-lite’ which I’ll try to unpack a bit more in the functioning labels prompt, but is part of the reason I prefer to say “diagnosed with autism” rather than putting myself out there and saying “autistic”.

I know a lot of people enthusiastically weigh in on the identity/person-first debate, and I understand their reasoning, but I think it would be a bit disingenuous of me to do so as I don’t really have a stake in it. I’ve never personally been on the receiving end of the ‘autism is separable from the person’ attitude that people who abhor person-first language are often concerned about, so I don’t see why my opinion particularly matters. People can define themselves either way and it’s none of my business to question or challenge them, though of course that also means that I’m opposed to anyone trying to tell someone they should identify themselves in a particular way. Again, if I was forced to refer to myself as either “autistic [person]” or “person with autism” I’d prefer the former, but more because I think it usually flows better in writing than because I have an ideological preference.

I will also say that I personally dislike “autistics” as a term to describe a group of autistic people/autistic people en masse. I’m not sure I could articulate why this is… I suppose I think it comes across as a bit reductive, or dehumanising? It sounds pejorative to me – I’ve heard enough people throw around ‘autistic’ as an insult (both to/about me, and in general) that I feel more or less the same way about it as I do about people uncritically describing a group of LGBT people as “queers”. It’s a bit different, since I have no problem with the word ‘autistic’ in general whereas I do dislike the word ‘queer’, not to mention the differing histories of the words – but it’s specifically the use of “autistics” in that context, by itself, that I don’t like.

I realise I haven’t really touched on the concept of identity at all in the above, having been caught up in other issues. I do have Opinions on this, and am particularly interested in the interaction between neuroscience/cognitive science and identity formation, but since this is the topic of a good chunk of the dissertation I’m currently writing, there’s no way I’m going to be able to do it justice in a couple of hundred words. Perhaps I’ll write about it separately some time.

30 days of autism acceptance: day 14

Talk about role models. Who are your role models? How have they influenced you?

This is going to be a short one, because I’m not really sure how to answer it! I don’t understand what the ‘role’ in this instance is meant to be: one doesn’t play the role of an autistic person – one is either autistic, or they’re not, and in this context I can’t think of anybody whose “behaviour, example, or success” (in the words of wikipedia) I want to emulate.

That having been said, there is one person I’ve been interacting with semi-regularly for a good three or four years over all this stuff – he was very helpful when I was agonising over whether to get assessed again, we happen to share a number of opinions, and he’s generally a pretty excellent person to know. I certainly wouldn’t be where I am now without his help, and I have a lot of respect for him: he deserves some acknowledgement if I’m talking about people who have influenced me in this context, and I think he’ll appreciate this picture in lieu of me causing embarrassment by naming names.

30 days of autism acceptance: day 13

Talk about something funny. Has anything humorous or ironic ever happened to you because you were autistic?

I don’t know about funny, but I do come across an awful lot of ironic situations, mostly involving other people being inconsiderate, self-centred, or communicating poorly. I won’t go into detail as I get the impression this is meant to be an upbeat prompt, but I am endlessly frustrated by other people’s double standards – if I inadvertently mess up in a social interaction and upset or offend someone I’ll often be thought of as thoughtless or rude, whereas if others are inconsiderate and bother me, I’m told it’s because I’ve misinterpreted, or expect too much of people, or am just overly pernickety… either way, it seems that I’m in the wrong.

I should say that this doesn’t always happen. For instance, my mum and sister are very understanding and tend not to take the things I say or do personally, though they might get frustrated in the moment – because I’ve interrupted them, or ignored them, or failed to notice someone’s upset, or something like that. It doesn’t generally bother me if they tell me to stop whatever I’m doing, because I know they don’t think badly of me for it. On the other hand, I sometimes come across as rude, patronising, or arrogant (especially online) and people having a go at me as though I’m deliberately being any of those things is really upsetting. I do absolutely welcome feedback on things like tone because I know I can accidentally hurt people sometimes, especially people who don’t know I don’t mean it, and I’m not trying to say that intention matters more than interpretation. However, when people fail to accept that they HAVE misinterpreted, especially when they then turn around and refuse to accept responsibility for someone being upset by THEIR actions in another interaction, it does frustrate me and makes me wonder what the point of trying to help or interact is.

Having said I wouldn’t sound out about this… oops.

I don’t really have any autism related examples of things being funny to me, because it sometimes seems like people are more inclined to laugh at me for misunderstandings and things, than with me. I have to say that my family are a bit of an exception to that, though – they find certain situations funny, and I don’t take it personally when they laugh at them. There are plenty of times where I’ve been oblivious to or simply not interested in the things going on around me that, while frustrating at the time (see above) my family can look back on and laugh at – I gather they find these kinds of things characteristically ‘me’, and I’m fortunate that they’re pretty accepting and wouldn’t generally have me any other way. Indeed, I think this is why it took me so long to get a diagnosis: my mum has said over and over that she doesn’t think of the things I say and do as ‘symptoms’, or ‘problems’, so much as just ‘me’. This meant she had trouble identifying the kinds of symptoms the clinicians were talking about because she simply didn’t think of them that way, and it took me and my sister (mainly my sister) explaining it to her for her to be able to answer the questions accurately.

So, while generally existing and dealing with clumsy interactions is more frustrating than anything else, I’m fortunate to have a family who are generally pretty accepting and don’t take my foibles too seriously.

30 days of autism acceptance: day 12

Talk about ableism. Have you experienced discrimination? Have you been the target of hate speech or slurs? Have you been a victim of abuse or violence? What’s the rudest thing someone has said to you about autism or you being autistic?

I don’t have an awful lot to say about this, and that’s mainly because I’m very cagey about being autistic in the wider world. Certainly I’ve had my share of people finding me weird, or being uncomfortable around me, or outright telling me I’m creepy, without them having any apparent awareness that there could be a ‘reason’ for that. I’ve deliberately avoided disclosing in some places because of fear of how people will react, though. For instance, in my most recent workplace I didn’t say anything when I applied because I was worried they would refuse to even consider me. I still haven’t, even though them knowing (if they actually had a decent understanding) could make things considerably easier for me, because I know they would talk about me behind my back, and might treat me differently. I think people see ‘different’ and ‘Officially Different’ as very… different things, and of course it can go both ways. Sometimes people think you’re being rude or struggling with something (for instance) on purpose, or because you’re not trying hard enough, and they might be more understanding if they know there’s a reason (my parents are one example of this – they’re not perfect now, but it took me being diagnosed with various things to make them see I wasn’t just making life difficult for the fun of it). On the other hand, I think people knowing that something about you is attributable to A Thing, they become almost… scared of you, or it? I do sometimes encounter people knowing some of my diagnoses who seem embarrassed to bring up things that they might have no problem talking about ordinarily – or worse, they suddenly act as though everything is Your Fault, and they can’t possibly be to blame for anything that happens, ever (this didn’t happen in relation to autism, but my ex often seemed to use my mental health diagnoses against me/ to worm out of taking responsibility for things, and I’m quite sure the same would have happened had they understood me as autistic).

On the whole, I’m reasonably lucky to be able to get by with people thinking I’m just weird, rather than Diagnosably Weird (I’ve used a lot of emphasis-by-capitals in this post, but it seems to serve a purpose). It does come with its own problems, of course, but as I very much keep myself to myself anyway, it means I almost never get confronted or directly antagonised. I think the worst things that have happened have been things like one of my teachers calling me unemployable, someone my mum used to work with calling me retarded, university tutors questioning whether I’m capable of completing the course. With the exception of that last example, which got to me in a pretty big way and still troubles me, these things don’t affect me day-to-day at all, and in almost all cases are down to other people’s ignorance and lack of willingness to understand, rather than any personal failing of mine. I don’t know if I would be so lucky if I was more generally open about things, but as I don’t imagine I’ll be able to get much further in things like jobs without disclosing at some level, I suppose I’ll find out in due course.

30 days of autism acceptance: day 11

Talk about sensory issues. Do you also have sensory processing disorder? What kind of clothes do you wear? What foods do you eat? Are you sensitive to light or sounds?  How do you deal with overstimulation?

I’ll start this by saying that I don’t really acknowledge any of the prompts above in what follows. This is mostly because I think there are more interesting things I can write about, with respect to sensory issues! Learning about sensory issues (that they exist, that I experience them) has been eye-opening for a number of reasons, and I’d rather talk about that here than rattle through a laundry list of sensory experiences that you could probably pretty much get from a sensory processing disorder checklist.

I think it’s quite common for people to start to look at their experiences in a different light following a new diagnosis of something. I certainly have. Prior to getting my autism diagnosis, I didn’t really think of myself as having sensory issues at all – I barely understood what the term meant and so I lacked that framework for explaining my experiences. I’ve learnt more over the past couple of years, and have been able to reconceptualise a lot of things in terms of sensory issues. While I don’t have a diagnosis of SPD (having never been assessed for it! – as far as I know it’s not something commonly assessed for or diagnosed in the UK) it makes more sense to understand many of my experiences in terms of sensory issues than anything else. I score in the ‘definite difference’ range on all seven subscales of the Short Sensory Profile (which was actually a shock to me, especially the “low energy/weak” subscale, though I think my score on that is for other reasons), and as far as I can remember have always had sensory troubles.

I won’t bother running through my ‘symptoms’ with a fine tooth-comb – I generally dislike doing that publicly, as I worry people are comparing themselves to me either in the spirit of one-upmanship or self-deprecation, and if I tried to do that I would constantly be bothered by the possibility I’ve forgotten something and so the list is ‘incomplete’. I think it’s more interesting to think about how some of the things that now seem so obvious were really puzzling for a long time. For instance, I used to be convinced I had some sort of agoraphobia because of how difficult I found crowded places, but I now recognise that’s due to noise, the ‘visually busy’ environments, lights, smells, limited manoeuvrability or having my personal space invaded, unpredictability of others, things like that. I am often (and have often been) agitated for no discernible reason, but now I understand that sensory issues are a thing that exists, I can usually trace back my mood to some sort of sensory discomfort (whether it’s temperature, or pain, or uncomfortable clothes, or any number of environmental stimuli). My so-called ‘faddy eating’ has been an issue ever since I was a baby, but obviously makes sense now. I’ve also been clumsy and inaccurate in my movements my entire life and often been told off for accidentally hurting people, or breaking things by not being ‘careful’ – or laughed at in ball games for either having awful co-ordination or hitting things far too violently (and yet conversely, I was also told off because my sister would copy me spinning and once fell over on a concrete patio because of it, whereas I would never get dizzy). I’ve had headaches for as long as I can remember but no amount of eye tests or brain MRIs could identify problems, until I realised last year that they might be due to visual stress (I’m not sure if that counts as a sensory processing issue, but since it includes the senses I’m including it) – lo and behold, I’ve gone from daily headaches to maybe half a dozen in the last 4 months, since I got my tinted glasses (I think they were all due to strong smells, though can’t be certain).

Learning that how I experience the world isn’t ‘normal’ has been troubling in some respects, but it has also explained a lot and helped me to recognise and ameliorate situations I simply didn’t understand before. I now know to look at features of my environment to attempt to explain irritability, restlessness, etc, which means I can get away from them if need be, rather than continue to get worse (or convince myself the issue is a mental health slide). There can be downsides, in that sometimes I’d rather still be blissfully ignorant of the cause of a particular issue – being better at identifying problems can make it harder to ignore them, especially if you’ve identified something you can’t escape from. On the other hand, it’s given me an appreciation for aspects of the environment I particularly enjoy. If I want to kill time I know I can head to the nearest boots or superdrug and chill out in the shower gel aisle smelling them all. Sometimes I can’t get enough of going around touching things (I picked up some pearl clay in Tiger yesterday and it’s brilliant). I know that squeezing my feet or the bridge of the nose can be wonderfully calming, and deep pressure in the form of a violent back massage or the like (I used to welcome my ex, who weighed twice what I did, lying on top of me) is relaxing just to think about.

I think of all the things I’ve got from or since my autism diagnosis, an understanding of sensory issues has probably been one of the most fundamentally helpful.

30 days of autism acceptance: day 10

Talk about stimming. Do you stim? How? What are your favourite stims? Do you have different stims for when you are happy or agitated?

I’ll preface this answer by noting that, although I originally construed this as a kind of exercise in ’30 days of self acceptance’ as much as anything else, I’ve been quite self-critical or generally negative in a lot of the posts so far. I want to try and avoid that, but am quite uncomfortable at the thought that people might read these posts and think I’m mostly ok with myself. Which is ludicrous, really, but I know this is the shame talking. So I feel the need to add the caveat that when I say things that don’t seem to be pre-emptively self-critical, it’s because I’ve made a conscious effort to restrain that urge in the hope that it’ll become less difficult with time.

OK, whingeing aside, I’ll actually respond now. Though I don’t call it ‘stimming’, yes, this is absolutely something that’s a huge part of my life. Often it’s about interacting with the environment – I’m very often touching or smelling things when I’m out or about – but I do a lot of things that are more self-contained as well, from picking my fingers or biting my nails and the skin around them, to flicking my fingers or rubbing my hands together, to swaying or swinging from side to side, to fiddling with any small object that happens to be in reach, to humming to myself, to pressing on parts of my body. My fiddling drives my family to distraction, and we talked about it a bit when I was being assessed and they commented on quite a few other things I do/used to do as well – staring at the washing machine, getting distracted watching the tap or the washing up liquid bottle when stuff’s coming out of them, playing with rice – they’re a few of the things that come to mind.

I don’t have ‘favourite’ activities as such, because to me that implies that I have choice in the matter. I don’t do any of these things consciously/deliberately, and I have to admit I find it a bit odd when I read about other people ‘trying on stims’ and buying dozens of stim toys, and things like that because it’s not something that it would really occur to me to do. That said, I have tried one or two stim toys. I tried a tangle a few years ago but didn’t really get on with it. I also picked up a fidgi-flip last March, and would absolutely not be without it now – it accompanies me pretty much everywhere, though I’m still a bit embarrassed about having it on me around family and such (no surprises that my fingers and nails are a complete state having spent four weeks at home, though they’re starting to get a bit better now I’m back at uni and can use that rather than picking at my hands until they bleed).

I couldn’t really say for certain whether I act differently when happy or agitated. My parents say I get very bouncy and flappy when enthusiastic about something, and I tend to notice myself humming a lot and fidgeting when I’m agitated or anxious. It’s not always straightforward to establish that though – often I don’t notice what I’m feeling until someone else points out, or I become aware of my actions, which might then inform my interpretation of what I’m actually feeling.

30 days of autism acceptance: day 9

Talk about special interests. Do you have a special interest? What is it? Feel free to infodump.

I actually don’t like the phrase ‘special interest’ all that much. I’ve talked about this before, and frankly it’s not that interesting so I won’t go into too much detail, but suffice to say I think it doesn’t really capture the way I engage with things that interest me. I know the term originates in Asperger’s 1944 paper, and is meant to be a fairly neutral if not positive. It does also have strengths in that it actually gives some kind of agency to the autistic person – I think the ‘clinical gaze’ in autism literature often glosses over the internal motivations of autistic people, treating them (us?) as black boxes, or worse, automata: beings who at best have reasons for acting that are so far removed from ‘normal’ motivation as to be inexplicable, or at worst are incapable of acting with any purpose, for any ‘reason’. For that reason, calling autistic people’s particularly intense interests ‘special interests’ is a step up from describing them as perseverations, or obsessions, or any other term that decentres the autistic person’s experience.

Having explained that, I suppose I just find it’s not a term I particularly ‘relate’ to. It implies that there is a difference between ‘special’ and ‘regular’ interests, and personally I don’t conceptualise my interests in that way. The way I see it, I engage with most things in an ‘all or nothing’ way: if I get interested in something, I get interested, and that’s the case whether what I’m interested in is something that I research for three hours in the middle of the night and never revisit again, or an ongoing ‘obsession’ (as my family charitably call it) that lasts years. So to me, there’s no meaningful separation between the two categories of interest, because what makes something ‘special’, from what I understand of the diagnostic criteria, is the process – the intensity, feelings of enthusiasm, urgency – and not the interest itself or the length of time it persists for.

Of course, the diagnostic criteria are predominantly behavioural, and the emphasis is on ‘symptoms’ that can be observed by others. On that understanding, the process is less important than observable features of the interest. While I know full well I have interests that are considered obsessive by others, I suppose I reject classifying my interests on the basis of what other people think about them! Perhaps I’m lucky in that I don’t really care what other people think – and perhaps that’s why I also find the ‘feel free to infodump’ clause a bit unnecessary and patronising, because whether I want to ‘infodump’ has nothing to do with whether I get ‘permission’… I know there are people who appreciate that kind of validation, though.

I know I’m kind of arguing with the question here rather than answering it, but that’s because I don’t like that this external way of classifing things has pervaded the ‘community’ in general. Of course I’m not going to tell other people not to classify their interests and engage with these ideas however they want: since my understanding is strongly experiential it would be hypocritical of me to claim to know what others experience, and there’s definitely something to be said for people’s experiences changing in a very real way, in response to external criteria and ideas about what people of that ‘kind’ experience (this is the subject of my dissertation, so forgive me if I go on about it a bit now or in subsequent posts). This is just how I understand the term and the experience of ‘special interests’.

30 days of autism acceptance: day 8

I’ll just preface this by saying I’m back at university now, so posting might become more sporadic (though of course, it could go the opposite way… we’ll see).

Talk about traditional media. Have you been influenced by autism themes in the media? Have you had to correct misinformation about autistic people that others got from the media?

Given that traditional media, by any definition I can find online, includes books, then absolutely. It was reading books on autism that convinced me that I should seek diagnosis.

I delayed answering this question because I wasn’t sure how to interpret it, so spent a bit of time looking through other people’s responses. I find it interesting that almost all of them refer exclusively to film and TV. This might be because most people participating seem to be in their teens and twenties, but I think that’s a restrictively narrow view of what traditional media is – it also includes radio, newspapers, magazines, books… even academic journals, I suppose, though that’s a bit of a stretch. While people might not think they are directly and explicitly influenced by autism themes in the media, I think it’s going too far to claim that one is completely free from their influence, because media is so pervasive.

I don’t think I’ve outright told anyone ‘you’re wrong about [x]’ (x being some misconception about autism that’s come from traditional media) – but then, even if the opportunity to correct someone arose, I don’t think I’d feel I have to take it, which means I can’t straightforwardly answer this question. What I will say is that I think lots of people (autistic or otherwise) misinterpret messages from the media. Maybe that sounds a bit arrogant of me, and I think it’s a very complicated thing and I’m undoubtedly not going to get that nuance across in this brief response, but I’ll mention it anyway.

I do get extremely frustrated with people who criticise ‘stereotypical’ representations of autism in things like film and TV because I think they’re often getting cross at the wrong thing. It’s a very common example, but I’ll take Sheldon Cooper in the Big Bang Theory. Personally, I like him as a presumably autistic character. Sure, there are things he does that I don’t like, but that’s true of almost all humans. What I have a problem with in that program is that, as a character, he’s played for laughs; as the butt of jokes; as the target for some really, really unpleasant behaviour from his male friends. I dislike Leonard a lot more than Sheldon, for instance, because I think how he treats Sheldon normalises humiliating and patronising autistic people. Amy and Penny, on the other hand, seem far more accepting to me.

This isn’t to say I don’t get where people are coming from when they bemoan the ‘stereotypical’ depictions of autism. But blaming the character for that is very unfair to people who are in some or many ways sterotypical. Yes, we absolutely need nuance in depictions of autistic people in the media (fictional or otherwise), but as far as I’m concerned, the main problems with depictions that are currently popular aren’t that they’re sterotypical, but that they’re treated badly by those around them because of traits seen as autistic. What I’d like to see is people being ‘called out’ in the story for showing an often really shocking lack of empathy towards characters coded as autistic. To me, that’s a much more positive move in the direction of ‘autism acceptance’ than simply adding more representation.

Right, I’ll get off my high horse now – and in the interests of keeping this brief, I won’t venture beyond talking about ‘autistic characters’, though I think there’s a lot more to be said about autism in the media in general, that’s probably been covered with much more detail and cogency by others.

30 days of autism acceptance: day 7

Talk about community. How are you treated by your local community? Do you participate in any online communities? How have they reacted to you being autistic?

I don’t have a good track record with being part of communities. I’m fully capable of throwing myself into something, but seem to lack the skills required to actually be ‘part of’ a community in a social, rather than semantic, sense. The trans ‘community’ is probably the best example of this: I have a decent amount of practical knowledge, enjoy researching things, and spend quite a lot of time working on the two trans groups/blogs I’m involved with, trying to answer questions and things. I still feel very much an outsider, though – I’ve not really managed to make connections with anyone, and I do feel very left out at times because so many people (on the facebook group in particular) seem to know each other and be able to talk to each other easily, but I don’t seem to be able to break into it. I know that’s partly my ‘fault’, in that I don’t actually care for socialising, so don’t put any effort into forming purely social connections, but I can get quite resentful because, no matter how much time I spend answering other people’s questions, when I pose my own I get next to no response. I’m not sure why this is. I don’t think it’s personal, in that people deliberately ignore me, because the same thing happens whether my name is attached to a post or I ask something anonymously. It must be something to do with how I come across in writing, is all I can think. I’ve been accused of being arrogant and rude in online interactions a handful of times, which I was honestly devastated by and puts me off future interactions, and I suppose I can come across as quite stilted and things, but when you’re doing things like trying to feel less alone or ‘broken’, having people fail to respond to you just makes that feeling worse.

That feeling of alienation has made me leave groups many times in the past, and the only reason I’m still a member of the facebook group mentioned above is because I have an admin role, which comes with a certain amount of responsibility not to abandon the other admins. I was also part of an autism facebook group for quite a long time, but posted a couple of times expressing difficulty with certain things, and found I was ignored, talked down to, or people just commented with their own difficulties and failed to respond to me entirely, which sounded like they were trying to one-up me and/or didn’t relate. When people seem to be friends with each other and you can’t break into it even in an autism group, I have to say that feels pretty bloody alienating.

Though I’m nominally in a handful of other facebook groups, I don’t think I actually interact within them at all, and I only lurk in case important information comes up (they’re all university related). My university has a disabled students’ community and it’s the same story, really – the few times I’ve tried to engage I’ve been pretty much ignored, which makes me feel quite down on myself and like there’s no point even trying. I honestly don’t understand how people have the energy to actively participate in multiple groups/communities because I’m exhausted by the two I’m in online! Perhaps part of it is that I gather lots of people don’t feel the need to keep 100% up to date with things, whereas I feel I always need to catch up with everything I’ve missed. I’ve dipped my toe in the water of plenty of online groups, messageboards, etc, but have become overwhelmed by the majority of them, or not been able to kind of… establish myself as a member of the community no matter how much I try to participate. It’s quite frustrating and upsetting really, because I hate feeling I’m completely locked out of something that seems to come so easily to other people, and I definitely get jealous of others for that reason. I don’t know that I necessarily get lonely, but it’s just that it would be nice to feel I was making a choice not to participate, if that makes any sense.

The above refers to online communities I’ve tried to engage with, but broadly speaking the same applies to IRL communities as well – in that I don’t seem to be able to connect with communities I have interests or experiences in common with. I don’t mean to be all ‘special snowflake’ about it, but so many people who I know (of) IRL (mainly at university) who talk about being isolated etc spend a huge amount of time with other people, seem to have friends, etc. I’ve tried to attend social groups so many times and it usually doesn’t go too well, though the issues are slightly different, as anxiety/uncertainty/unpredictability are much more of an issue IRL. I used to be entirely reliant on someone I know attending so I could attend with him, which was difficult as he would often drop out of things at short notice, or turn up late. Once, he urged me to attend on my own anyway and I said I wouldn’t as I was convinced everyone there hated me, and he said he thought that was highly unlikely as they didn’t even really know me – which was helpful, in a way, but also kind of upsetting because this was a group I’d been part of exactly as long as him, and he’d apparently managed to forge all these relationships whereas I just… hadn’t. (Funnily enough, he’s recently been diagnosed with autism as well, and while I don’t want to presume anything about his experience, it relates to what I mentioned earlier – if other autistic people are still capable of forming relationships with people, why the fuck can’t I?)

This is just me being bitter and resentful, really, and it’s nothing I’ve not droned on about before. To briefly address a couple of aspects of this ‘prompt’ that I’ve not already covered – I have mostly been using ‘community’ so far to refer to a kind of abstract group formed around shared interests, experiences, or aspects of identity (though geography comes into play somewhat). To use community in a different sense, I suppose I could point to things like the village I live in, or my College, or my department. My answers aren’t all that different though, really. Though I can sometimes get on ok with people on an individual level, I apparently am just incapable of being part of a group. I’d like to think this is just because I prefer my own company, or to interact on my own terms, but I do feel like my hand has been forced in this regard and I don’t know how to change that.

Finally, briefly, I’ll explicitly address the concept of communities reacting to me ‘being autistic’. This isn’t a straightforward issue, as I’m not explicitly ‘out’. I think I probably come across as unusual enough that people kind of realise something’s going on, though. I’ve been called aloof, standoffish, shy, closed off, unfriendly… all kinds of things, and I think I must give off the impression of not wanting to interact with people/groups… of course, that’s often true, but almost always for different reasons than people seem to assume. So I suppose my response to the question of how communities react to me is that they find it as difficult to accommodate me as I do to engage with them. This, perhaps, comes back to something I wrote a few days ago, about communication being a two-way street and perhaps I need to be more honest and open in order to facilitate interaction, but the thing is I don’t really want to lay myself bare in that way, and just end up simmering in the resentment that other people don’t seem to have to do that in order to be accepted by their communities/peers, so why should I?

I don’t know. Socialising is hard and I wish I cared less about it than I do, to be honest.