One Way Friendships

(This is a slight reworking of a post i started writing about a year ago, but didn't get round to finishing at the time, but which i thought it would be somewhat appropriate to resurrect for the next Disability Blog Carnival, of which the theme is "Relationships".)

The opening line of Sarah Kane's groundbreaking and incredibly intense play about depression, identity and psychiatry 4:48 Psychosis (written shortly before her own suicide, and only first performed after her death) is "What do you offer your friends to make them so supportive?"

This is the question that I have always wanted to ask the neurotypical world, and not rhetorically but in honesty. (I still haven't worked out whether Kane's intention was rhetorical or to honestly ask a question to which she genuinely did not know the answer - but, well, 4:48 Psychosis is a work which has such a huge emotional impact on me I find it hard even to talk coherently about it - suffice to say that, when I saw it performed as a monologue by an incredibly charismatic amateur actress in a very small, intimate venue in... I think 2002... I rank that as one of the defining emotional experiences of my life, and Sarah Kane has the rank almost of a deity in my head.) In any case, that line struck such a chord in me, that resonated so powerfully, that I count it as one of the things that brought me out of my denial and onto the path that led me to self-definition and ultimately diagnosis as an autistic person (and my path to diagnosis is something I meant to write about very early on in this blog, but somehow never got round to... after clearing my current backlog of things I want to write about, perhaps I will...)

Part of why it resonated so hard is because of the frustrating path that so many of my friendships have taken. For me, friendship is something incredibly important, in fact quite possibly the central value of my life (I wanted to insert a quote here from a book which I read part of while staying over at a friend's house a few months ago, Valerie Lehr's Queer Family Values, but have been having trouble getting hold of a copy of my own - basically, it's something along the lines of friendship, as an (ideally) equal and reciprocal relationship, being the paradigmatic relationship of a truly liberatory "family values", as the opposite of the hierarchical, non-reciprocal relationships of the patriarchal nuclear family). A core personal principle for me is that I never want to have an intimate relationship with any being which is not as near as humanly possible to entirely equal and reciprocal (hence my not having or wanting either pets or children). Despite this, it deeply frustrates me that, in practice, the majority of my friendships seem to end up decidedly non-reciprocal...

The most obvious way that this manifests itself is that I nearly always seem to be the person always initiating contact in every friendship - I am always calling my friends, but it's very, very rare for any of my friends to call me. In a few cases, I know that that's because people have social anxiety or communication-initiating issues of their own that make it very hard for them to call people, even if they know them well, and that they are genuinely appreciative of me calling them. In a few others, I know that they are the same with everyone, or that they simply never credit their phones because phone conversation isn't very important for them. In others, it's simply that they are busier than I am - but I can't help end up feeling paranoid when in almost every friendship I have ever had, there has been an obvious imbalance in terms of it always being me calling them, with that almost never reciprocated.

(I am currently lucky enough to have a couple of very, very valued friends who do actually call me, in part because I have talked to them about these issues, and that's incredibly important to me - but I still find it hard to believe, due to experience, that any such state of affairs will last very long...)

I have lost many, many friends in my life through this - when I have tried to get through to them for weeks or even months on end, and not succeeded once, and sent texts and emails which have also gone unresponded to, I ultimately, perhaps inevitably, end up simply giving up - although this is harder the more valued a friend they are, as for me deciding not to bother trying to keep in touch with someone any more is a very final and irreversible thing for me. (I also permanently lost touch with quite a few friends when I had my phone stolen a couple of years ago, and didn't have any of my numbers written down elsewhere, despite the fact that I managed to get a new SIM card with the same number, simply because none of them called me, and I was unable to call them.)

The thing is, I have absolutely no idea what a neurotypical person would do in this sort of situation - and I am also half convinced that neurotypical people don't get into that kind of situation in the first place - from my perspective, it seems that there must be rules for obtaining and maintaining reciprocal, mutually supportive friendship which I was never taught, but which most other people must somehow know and follow instinctively. I have no idea, for example, how long it's "normal" to wait for your call to be returned after you have called someone and not got through before trying to call again - but I also strongly suspect that most neurotypical people don't face that dilemma in the first place, because they do get their calls returned - and I don't know why...

There's another form that this non-reciprocity takes, which is subtler and somewhat more difficult to write about. In those friendships which i do manage to maintain, i very often feel like they are unbalanced in a way that always leaves me feeling particularly guilty and self-hating; the direction of support within the friendship, which ideally should be an equal flow both ways, seems to become unilateral. What seems to happen is that either i talk to a particular friend about the worries and problems in my life, with the expectation that they will likewise talk about their worries and problems to me, but for some reason that reciprocity doesn't happen, and they simply don't tell me about theirs, leaving that aspect of the friendship as a one-way thing when that was never my intention, or, in the more insidious form of it, every conversation i have with a given friend seems to end up developing into a one-way advice-seeking session, in which my problems become the whole focus of the conversation and theirs do not even get mentioned - again, without me ever having intended that that happen. (I've even - more than once - had cases where the purpose of a meeting or a conversation was for me to try to be somehow useful or helpful with some difficult situation going on in a friend's life, and i brought up something from my life as a potentially-helpful parallel, and that ended up turning the conversation into one about my problems...)

It's hard for me to describe exactly how this role-switch happens, or even for me to verbally describe the "roles" themselves (except by analogies to "professional" relationships like counsellor/client, which is a train of thought i'm not particularly keen to follow), but it is always apparent to me, and always deeply frustrating, when it happens - but, once it has started happening, i seem bizarrely powerless to reverse or stop it without ending the whole conversation (and probably in doing so strengthening the impression that i am "the one with the problem").

The way this leaves me feeling is as if i am somehow an inherently "parasitic" person - one who is doomed to "take" but never "give" in every relationship - despite my strongest desire being to "give", to be "useful", to provide something of genuine value to a person who i am in a valued relationship with. This reminds me of what i have heard people - often those with vaguely spiritualist or "New Age" leanings - describe as "psychic (or "energy") vampirism" - and makes me wonder if many of the people so described - often in extremely damning terms, such as in this article (warning: don't read if you are allergic to woo) - are actually intentionally "draining energy" from others at all, but rather suffering from a clash-of-neurotypes communication problem. (I believe i've heard of people - possibly in the Goth subculture - actually self-identifying as "psychic vampires" - but couldn't find any first-person accounts from such people, although i'd be interested to.)

I'm left stumped as to why this happens - possibly due to non-verbal cues (that i'm in all probability not even aware of) being misinterpreted by the other person? or to some aspect of my verbal "style" (word choice, sentence structure, etc)? I think one part of a reason for it may be issues related to "empathy", as i wrote about here, but am not sure if that's particularly helpful in trying to lessen or avoid it. I think another reason for it might be that my need for social interaction in general seems to be a lot higher than many people's (including both autistic and neurotypical people) - to extend the vampire metaphor, it reminds me a bit of the recent film Daybreakers, which features vampires who remain fairly "human" as long as they get a steady supply of blood, but if deprived of it rapidly mutate into monstrous-looking, feral beings apparently lacking in human sentience, which resonates with me because of just how strongly i feel like i am falling away from humanity if deprived of contact and conversation with other people.

(There are also things i want to say here, that feel vaguely related to this post, about how a basic ethos of helping/serving others can very easily get twisted into something deeply unhelpful, and the probable influence of Christianity on that in my case, but i think i'll save that for another post.)

So... i'm kind of wondering if any other autistic people might experience this phenomenon, particularly in friendships with non-autistic (not necessarily neurotypical) people - and, if you do, if you have found any effective ways to deal with it. My active hope remains for fully equal and reciprocal friendships, and i have some which it would be reasonable for me to believe are such, but i think the nagging paranoia is always likely to remain that in all my friendships, i "take" and don't "give". Tentatively, i think that this sort of difficulty is less likely to develop in autistic/autistic friendships than in autistic/non-autistic ones - but then, i have sometimes encountered situations with other autistics where it feels like there is a double dose of communication barriers rather than a neutralising of such barriers...

Even more tentatively, i wonder if discussion among autistic people about how to deal with these sort of issues might eventually lead towards developing an entirely new "autistic model of friendship", which might function very differently from what most neurotypical people see as a functional relationship between friends. Posts like this one, and the kind of autistic communities that are slowly developing out of events like Autreat and Autscape, give me hope that such a radical remodelling is possible, but i'm still a long way from knowing what exactly it would look like. Possibly even the concepts of equality and reciprocity in friendships that seem so important to me might actually come from a neurotypical-centric set of values that does not take into account neurodiverse ways of relating to others.... i don't know. It's difficult for me to even speculate that far. Anyway, if anyone is reading this who has been frustrated by the non-reciprocity of my friendship, then i want you to know that this is very much unintentional, and any suggestions for how to make our friendship(s) more reciprocal would be very positively received.

Another quick template/code-related request

While checking whether i'd already posted anything about a subject peripheral to a "proper" post i'm working on, i realised just now that i now don't have the "search blog" option that most Blogger-hosted blogs have, which might make it more difficult for people to find anything particular that i've written about any given subject (um, that is, if anyone wants to).

(Yes, i'm aware that if i want to search for posts containing a particular word or phrase on this blog, i can simply go to Google and type in site:biodiverseresistance.blogspot.com [whatever i want to search for], but not everyone knows about things like Google's "site:" option, and having a visible search box makes it simpler and more intuitive IMO...)

So, does anyone know the HTML code for the Google/Blogger search box, and where i would need to insert it in my template?

(Apologies for probably embarrassing HTML-cluelessness...)

Help request re comments widget

I got a lovely email from the equally lovely Kowalski of Here Be Dragons (formerly Turner & Kowalski, and a blog which i keep forgetting to add to my blogroll, so before i forget i'll do so now) the other day, informing me of a better "recent comments" sidebar widget than the default Blogger "feed" option, which gives a link to the post that each recent comment was on, rather than simply to the comment itself: the code for the widget is here, and an example of a blog which uses it is this one.

However, when i pasted the code into my blog's HTML, replacing the code for the existing "most recent comments" feed (and, as per the instructions, replacing "YourOwnB1og.blogspot.com" with "biodiverseresistance,blogspot.com"), and attempted to preview the changes, i get the following error message:

Your template could not be parsed as it is not well-formed. Please make sure all XML elements are closed properly.
XML error message: Open quote is expected for attribute "{1}" associated with an element type "style".

I'm not sure why this is happening, as when i saved the code as a .txt file and then opened it with Firefox, it showed exactly what it was supposed to, with the actual most recent comments on my blog. So, does anyone know what i'm doing wrong here?

Taking on the Triad

I've been meaning for a while to post about the changing "official" diagnostic criteria for autism. There are going to be some significant changes to how the autistic spectrum is going to be classified in the upcoming DSM-V, which i'm (probably) going to cover in another post, but what i'm specifically concerned with here is the "triad of impairments", held by many professionals and bodies including the UK's National Autistic Society to be the fundamental defining characteristics of autism as it is currently conceptualised (at least by the psychologist and neurologist establishment, if not actually by the autistic community).

As currently constituted, in its simplest form (as described on the NAS's "What is Autism?" page), the "triad" consists of:"difficulty with social communication", "difficulty with social interaction" and "difficulty with social imagination", while additional "related characteristics", not part of the "triad" itself (and hence presumably not seen as necessary for establishing an autistic spectrum diagnosis) include "love of routines", "sensory sensitivity", "special interests" and "learning disabilities". Essentially the same information is repeated in varying amounts of detail in several other pages on the NAS website, such as here and here, where it states "A range of other problems is also commonly found in association with the triad but the three basic impairments are the defining criteria." The origin of this definition is usually regarded as a 1979 paper by Lorna Wing (a co-founder of the NAS) and Judith Gould, as referenced here (Google cached HTML version of a Powerpoint file).

IMO, the existing "triad of impairments", even with the additional "related characteristics" (which seem somewhat awkwardly tacked on, as if those responsible were themselves aware that their "triad" was incomplete, and more elements were needed to fully describe autism as a meaningful entity), fails at defining autism both by inaccuracy in what it does contain and by failing to include many of what autistic people consistently report as among the most significant components of what distinguishes us from neurotypical people.

Firstly, while few if any autistic people would deny that they experience difficulties with "social communication" and "social interaction" (at least with neurotypicals!), that third element, "social imagination", is much more contentious. Many different autistic writers have challenged the assertion that autistics "lack imagination", both with regard to the "theory of mind" idea (which i won't directly take on here, but will link to excellent posts about by several other autistic bloggers... and of course this from the incomparable ISNT), and with regard to the allegation that autistic children do not "pretend play" or otherwise "imaginatively play" (many of my earliest memories are of pretending to be various animals or fictional characters for my childish amusement, and slightly later in childhood i concocted very many long and elaborate fantasies in which i "played" many different characters, often simultaneously - and i'm very far from the only autistic person i know with similar childhood experiences; in fact, i'd probably even say that, from the anecdotal evidence i've heard, autistic kids are more likely to be heavily into that sort of imaginative play than neurotypical kids!), while many would argue that other aspects of the "impairment of social imagination" as described by the NAS better fit into the categories of "social communication" and/or issues related to sensory processing (on which see a bit further on in this post).

Secondly, there are at least 2 very major aspects of autism as experienced by actual autistic people (each of which is probably as large in scope as the whole social interaction/communication/"imagination" triad put together) which Wing's triad leaves out altogether - namely, executive function issues (including the well-known "autistic inertia", which, while aspects of it are often mischaracterised as "social anxiety" (among other things), has nothing at all to do with social interaction, communication or imagination, at least as far as i can tell from my own experience of it) and sensory issues (including sensory overload and all the vastly varied and well-documented differences in sensory perception and processing between autistic and neurotypical people).

Thus, if i got to define the diagnostic criteria for autism, i would propose an almost entirely different triad of impairments, consisting of the following 3 components:

1) Communication impairment

This category, IMO, would include most if not all of the valid parts of all 3 elements of the traditional(?) triad (as i don't really see any meaningful dividing line between the categories of "social communication" and "social interaction", and most of the "social imagination" stuff that i actually agree exists also seems to be more about difficulties with (perhaps more receptive than expressive) communication than anything else). Other things it encompasses would include difficulties with use of language (such as my issues with pronouns), difficulties with interpreting and/or producing nonverbal forms of communication (gesture, vocal intonation, facial expressions, etc.), "literalism" and difficulties with understanding metaphors, euphemisms, etc., [others?]. As such, this is possibly the broadest or "biggest" category of autistic impairment, and certainly the one most traditionally identified as synonymous with autism to the extent that the other 2 major aspects often go completely unrecognised in both medical and popular discourses about autism, even though they are just as consistently reported within the autistic community.

2) Executive function issues

This includes a very large percentage of the "non-social" aspects of autism, one of the main ones being the aforementioned autistic inertia , but also things like difficulties with planning and organisation, time perception/time management, [others?] and, IMO, many of the traits often attributed to "attention deficit disorder", but which are found (in my experience) as much in autistic people as in people diagnosed with AD(H)D (although, of course, many people are increasingly diagnosed with both an autistic spectrum condition and AD(H)D, and just as many autistic people have some traits typical of AD(H)D, many people with AD(H)D have some autistic traits, meaning that there is a strong argument for regarding both as (at least sometimes) part of the same spectrum). I also suspect that much of the archetypal autistic "need for routine" and "ritual" repetition of acts or words/phrases is related to executive function issues as much as if not more than to communication impairment.

3) Sensory processing issues

As well as the obvious examples like sensory overload and sensitivities to specific stimuli (light, pressure, temperature, particular tastes or textures, etc.), this category would include a huge number of other sensory issues which, if not currently part of the diagnostic criteria for autism, are consistently associated with autism: synaesthesia, prosopagnosia ("faceblindness"), deficits or differences in proprioception (which leads to many of the issues with physical coordination which exist in the overlap between dyspraxia and autism), and [others?]. Some autistic people have argued that all of "autism" is ultimately due to sensory processing issues (for example, that the difficulties autistic people have with nonverbal communication actually result from atypical auditory and visual processing making perception and interpretation of it difficult, rather than from a difference in the communication-related parts of the brain per se), but to me that theory seems overly reductive, and there's also the issue that there are some autistic people who don't report sensory processing difficulties: however, while i'm not entirely convinced that every aspect of autism is sensory in nature, i do think it's a major and difficult-to-deny part of it.

All of these 3 aspects of autism demonstrably overlap with each other - for example, prosopagnosia and the notorious issues with "eye contact" (a bizarre phrase to me, with the image it conjures up of people's eyes actually touching each other...) are in the overlap between sensory processing and social communication, attention-deficit issues are very often an overlap between sensory processing and executive function, and difficulty with initiating conversation or other social interaction can be partly due to communication difficulties and partly due to inertia/executive function issues - but nonetheless i think most if not all widely-recognised aspects (or "symptoms" as the DSM types would doubtless say) of autism (that i can think of, anyway) fall into at least 1 of these 3 broad categories, or can be explained as an interaction between them.

(Of course, it's also very much worth pointing out that dividing autism up into any 3 "sections" is itself thoroughly arbitrary, and by conceptualising things slightly differently it could probably just as easily be split into 2, 4 or any other number of major aspects - it's purely because of the existing phrase "triad of impairments" that i've chosen 3 as the number to go with here...)

A problem with this suggested "New Triad" is that some autistic people may not have, or feel they have, all 3 aspects of impairment or difference. However, that's equally as true, if not more so, of the "original triad" - in particular, very few autistic people i know would agree with the "social imagination" element of it - and my guess would be that a substantial majority both of those "officially" diagnosed as on the autistic spectrum and of those self-identified as autistic - which it's worth pointing out are not identical sets, as both misdiagnosis of people with other conditions as autistic and missed diagnosis of very clearly autistic people exists - have at least some elements from each of these 3 categories.

Also, as is often neglected, the whole "autistic spectrum" is itself an ambiguous section taken out of the much, much larger spectrum of human neurodiversity, with very arbitrarily drawn boundaries, and with diagnostic categories generally considered both within and outside it overlapping with each other to the extent that the same person can easily get different diagnoses from different "experts", making it very much possible for people to have some autistic traits without "being autistic", or conversely to "be autistic" without having all of the recognised autistic traits. People with many other diagnoses such as dyspraxia, AD(H)D, "nonverbal learning disorder" or "semantic-pragmatic disorder" (the latter of which, as far as i understand it, seems essentially to mean "autism without significant sensory issues") may fit wholly, partially or not at all into any particular set of diagnostic criteria for autism. Therefore, if i got to set a "reasonable" diagnostic guideline, i would say that anyone who exhibits at least 2 of the 3 primary areas of impairment and is not better served by a different diagnosis can be classed as "autistic".

Of course, this raises the point that "autism", as a diagnostic entity, is almost certainly not one "thing", so much as a convenient term for a group of traits/symptoms that commonly go together, but may have separate origins and/or be present in different people for different reasons - probably including genetic causes in some cases, organic brain damage (occurring before, during or after birth) in others, and perhaps other factors as yet unidentified. (Some people have argued that, because of this, "autism" itself is not a particularly useful term - however, IMO, it describes a coherent enough set of characteristics to be useful regardless of the common etiology or otherwise of those characteristics, as well as being an important enough part of a very large number of people's identities that there would be massive (and justified) resistance to any attempt to scrap the term altogether.)

(I want to say something here about the common conception of diagnostic entities as somehow discrete and "immutable" natural categories, whereas in fact their existence is dependent on human identification and description, and therefore culture-bound, but don't seem to be able to express it in a way that doesn't sound more postmodernist/relativist than i'm happy with... maybe in another post...)

A corollary of this is that, because "autism" is not a fixed and immutable category but one which is defined by consensus, contains blurry edges and overlaps with others, there is probably no individual trait which every single autistic person has, and that possession of any particular individual "autistic trait" does not in any way imply possession of any other. However, i'm fairly confident that everyone or very nearly everyone who finds it useful to self-define as "autistic" will fit broadly into at least 2, and more likely than not all 3, of the categories outlined above. (If anyone feels otherwise, i very much welcome your thoughts on it...)

(Now i've written this, i'm wondering what sort of formal research/evidence would be necessary to try to turn it into some sort of formal proposal to the NAS (or whoever is the most appropriate "authority") to redefine the "triad" - if of course there's sufficient autistic-community support for it. Any ideas?)