MH

mental health in autistic people 

is not something anyone outside the autistic community is really interested in 

the way anxiety and depression and sleeping and to a lesser extent now eating issues work for me

is not how they work for my nonautistic and especially NT peers 

we don’t get each other when we try to empathize 

I seek out autistic people

because I struggle undertanding the way mh works for me

I wish there were therapies and workshops and even groups to go to 

I would go

I would get out of my safe room and go and try really hard 

I have a diagnosis but now I need to work out how to live as autistic 

what is there to access for me?

can we help each other?

what do you struggle with?

W is for Why Time is a Rubber Band, for Un-Boxed Brain

Why time is a rubber band: on autistic perception of time as difference without deficit  

This is a non-definitive short essay on autistic temporality.  

I became interested in the question of ‘autistic time’ a few months before my formal diagnostic assessment. Perhaps typically for an undiagnosed adult questioning whether they are ‘on the spectrum’, I developed a fixation with autism. Everything about autism pulled me in, indiscriminately. It was as though I tried in a single colossal yawn to suck in everything ever produced in response to the concept, and anything else that may possibly relate. I cannot explain what happened exactly, but I know that months flashed by like days. Time always seemed to, under similar conditions, rapidly escape me – completely ‘pass me by’ – something my mother remembers as markedly atypical about me as a child. You seem to have a distorted, poetic sense of time, she said. And now again, fixated on a new problem, it was as though the timeline of my days – having gone stretched and stretched and stretched in months of frustrated ennui – had finally been released, snapping me into the future. 

I don’t really remember those months. Nothing else seemed important. This is what makes Autistic interests ‘special’ perhaps, what makes them so unlike (but also alike) other obsessions. It’s not the interest itself that is so odd or strange. It is the sudden rapidity gained by the world around it, the sheer velocity that life can take.  

I began my exploration with what I would now call the ‘pathology paradigm’. I read landmark papers, case studies, diagnostic manuals in their many historical reiterations. I looked for myself in the changing, competing and contradictory definitions, now seeing a part of myself precisely reflected, now losing that glimpse again. The literature of impairment was not what first made me question if I were Autistic, however it spoke to some of my seemingly incorrigible struggles, identifying my actions as ‘behaviours’, my tendencies as ‘traits’. What I thought were my own idiosyncrasies now fit uncannily well with a pre-pathologized way of being. And yet, I was frustrated and underwhelmed. The pathologists seemed mostly uninterested in theorizing connections between Autistic ‘inner’ experience and ‘outward’ behaviour, favouring biomarker-behaviour speculation instead. The Autistic to them was a rudimentary mind locked in an android body, encasing an enigmatic brain that will one day, they seemed sure, be completely understood. 

And yet despite the pathologists’ faith in the existence of the elusive biomarker – the material cause of ‘the autism’ for neurobiologists to locate – their accounts seemed to lack any talk of difference. Instead, they seemed to assume that Autistic people are the same as typical people, only with more hemispheric lesions, more suffering in their lives, more incoherent fears and desiresand an innate and almost unique inability to truly access and appreciate the world.

Again and again, the perverse conclusion: Autistic difference is really a failed identity with the healthy control, only ‘different’ insofar as deficient, only deficient insofar as pathologically ‘less’, or pathologically ‘more’ than the typically developing, the ‘neurotypical’. Even if the Autistic can do something well or ‘better’ than the non-autistic, this is still to be understood as necessarily bound to lack. Whether good, talented, gifted or ‘savant’, the Autistic is still to be shown as shut off from something, a ‘something’ that would so easily and naturally be available to ‘the rest of us’, to anyone with a normal neurology.

Autistic life forms were conceptualized, I came to understand, as typical life forms, only ‘affected’ by a disorder and therefore – no matter the specimen – smaller, shrunken, shriveled.  This is the difference between the Autist/Autistic and ‘person with autism’. The ‘person with autism’ is denied personhood, because their identity is not theirs to describe. 

Unsatisfied, I turned to Autistic autobiographies. I came across a website which many of you may know, M Kelter’s Invisible Strings. I read and reread M’s writing. It gave me a strange feeling. It was as though I recognized the unnamable things he tried and often struggled to describe, although our situations were quite different. Rather than a sense of identity with M’s descriptions of himself, it was the kinds of problems that he couldn’t quite pose that I knew were my set of problems too. I read a story about a final year of college, philosophy books, long walks, insomnia, isolation. About something without a name eroding your sense of time.  

This struck a chord, familiar. 

It’s true. The world rushes fast past me and I can’t stop it.  

Memory. People, gestures, expressions. Collaged parts of other children’s moving bodies. No memories of their faces. Contours of static objects multiply into terrifying cinematic series. Shadows constantly moving around me when I was small. The unending roar of a toilet flushing a floor above. The obsessive need to close doors to minimize the incoming, to minimize aural and visualmovement just at the periphery of my perception, to try and arrest for a moment the change imperceptible to flippant parents and angry teachers and laughing peers. Unnamed objects full of colour, bursting with shape. Trees, terrifying, snaking, incredible tactile trees. Being dragged away from every single thing I enjoyed, constantly nudged, rushed, screamed at. Don’t be so slow. Pay attention. Why can’t you plan ahead.

Each faraway memory stands out stark, loaded with several incomplete pictures within it. Each picture dragsheavy with overbearing, excruciating levels of detail. Each image encodes several seconds of motion, repeated meaninglessly on loop over and over and over, like a complex .GIF file. Sensations stand out like open dollhouses, odd figures without date and context.  

Years go by and I don’t get as far as I am expected. I drop out, I fuck up, I don’t get a job. I lose friends, I lose people I love. I don’t learn the social lessons fast enough to keep the people who run out of patience. I am always late.   

… 

‘It’s not a mental illness. It is a neurodevelopmental condition’.  

Rubber bands are hard, elastic, musical, rich with potential energy. A rubber band can stretch beyond your expectations, and snap painfully just as you thought you understood how it works. The doctor who diagnosed me had one around his wrist. The italicized words are his.  I don’t remember his face, I was too sick with anxiety to try. And yet, so easily I recollect the memory of his thin wrists, thin fingers, thin pen, floating over and across the lines and pages of my life as he pauses over and takes into consideration my partner’s testimony, my earliest school reports, my medical records, my atypical pain threshold, my shit jokes, my repetitive head hitting, my anorexia and bulimia diagnoses, my hospitalization, my anti-social behaviours my frequent suspensions my sexual assault my failures to turn a fresh leaf my inability to meet people halfway my spinning my screaming my loss of speech my years of exclusion and isolation.  

Snap, goes the rubber band. I drop my commas as everything that my diagnostician tried to arrange into a linear timeline happens to me again, unevenly, in warps of association, a simultaneous sequence of inaccessible nows, happening again together unevenly all at once. He asks me questions about the present and I try to filter the patterns of the past to give a good answer but people, impatient again talk around me as if I don’t understand, as if I am not quite there.

Autistic time is a rubber band; elastic, non-linear just like and unlike any other. I just need a minute to catch my breath.  
This essay forms part of a series of posts addressing themes from the neurodiversity movement and paradigm which will be published during the course of April 2016. To read the rest of the posts, please click here.

some notes on formal dx

[written Saturday 16/04/16]

Today – 16 April ’16 – I was diagnosed with autism.

After all the obsessive doubting, it is strange to hear Dr Joseph say ‘I think you have the condition, it is quite clear’. 

So many ideas in my head, so many more things to think deeply about.

Police are patrolling the train like dementors among a dispersing crowd of bored, sweaty football fans. I feel no safer, only more on edge. 

My arm hurts from yesterday’s breakdown, when I smashed it into the metal of my bed, to stop myself from screaming and rocking and drooling, crawling on the floor.

I feel like I will be able to try again now. Like I can take an interest in my work again and not hate myself and not ‘compare [my]self to other people’. 

What might it be like, to try and follow or apply that advice?

poem 2 : train poem

I got through the train journey as if in a mundane dream, in a tense clot, waiting to choke back my vomit but never quite having to do it, reading my book eyes locked with the pages and the texture of the pages I mean the very fibers of the paper repeating with ceaseless variation was calming me down like touching a wall when your legs give when ur stomach churns when ur cunt hurts because u ‘reclaimed’ another inch of systemic violence tripping on the way home missing the fact that the pavement is rough slowing you down because your thoughts race because they come, come, come smooth knowing nothing of blood brain barriers like thick black waste fumes on a Moscow highway that taste like nearly no memories left that tastes like all possibilities for disruption have been exhausted that taste like no future no future no future no future no future no future and (no) despair. I can’t look people in the face because they drain me because they remind me that I’m never not tired and never not fighting back and I don’t know what they want from me and what I should do so either I mirror them right back or plan my escape my cut through route to my next home never not on my way towards an alone horizon of my perfected, my faultless, my meticulous one way out.

test 1 : RAADS-R

This is a small entry on the diagnostic tool RAADS-R, my understanding of how it works, my personal notes after taking the test given in poetic form.

The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) is a clinical tool for screening adults with suspected Autism Spectrum Disorder (ASD). The accompanying study claims it was ‘designed to address a major gap’ in screening process, meaning it was designed specifically to pick out people with ‘mild or subclinical ASD’ whose behavioural presentation may not display enough obvious ASD traits and so offers a risk of being missed by existing diagnostic tools. The validation study of RAADS-R was conducted across 9 centers (USA, Canada, England, Australis), 779 participants (201 ASD and 578 comparisons) took part. Interestingly, comparison subjects included a group with a range of ‘other’ DSM-IV-TR diagnoses (axis-1), such as Anorexia Nervosa, PTSD, Major Depressive Disorder, Generalized Anxiety Disorder, Social Phobia and Bipolar Disorder. Given that data was available to clinicians m, I would have liked to see more detailed result breakdowns in the published study graphs.

It is an ‘incomplete’ diagnostic system (insufficient for diagnosis) but comprehensive enough to provide a valuable indicator as to whether the subject is on the autistic spectrum or not. RAADS-R is also a ’self-assessment’, meaning that like the more widely-known AQ it is intended for adults (18+) with ‘average and above average’ IQ to be completed using one’s own judgement. Unlike with the AQ, RAADS-R authors intended the self-assessment process to be supervised by a clinician. The clinician’s role is to ensure answers are entered in appropriate columns, as well as providing the subject the opportunity to discuss any questions, offering clarification when required.

A total of 80 questions make up RAADS-R. Derived from DSM-IV and ICD-10, these are intended to screen across four ‘symptom areas’ specifically pertaining to ASD: language (7), social relatedness (39), sensory-motor (20) and circumscribed interest (14).

Much like on the AQ, each question appears in the form of a short statement that you can then respond to by choosing from four options:

This is true or describes me now and when I was young

This was true or describes me only now

This was true only when I was young (16 years or younger)

This was never true and never described me

Unlike the AQ and most other self-assessment screening tools, RAADS-R gives you the opportunity to describe something about yourself across time, i.e. considering the timescale of your life as you remember it. This has its advantages, as it can indicate your acquisition of coping/passing techniques and pull these apart from continuing struggles that while not ‘obvious’ to bystander or GP, significantly complicate daily life and could mean you require assistance. The ability to ‘chat and make small talk’ could maybe be learned. Similarly, an understanding that ‘appearing normal’ is sometimes a matter of performing (or not performing) specific acts within given contexts can be acquired. It is possible to still find change hard, but be able to somewhat cope with it. RAADS-R makes some room for acknowledging the existence of certain mental states and tendencies that do not have a single necessary behavioural correlate, but can nonetheless be understood as specific to autism.

There are obvious difficulties too. RAADS-R demands absolute answers to vague questions that can be hard to understand and answer. Consider the following:

‘I can tell when someone says one thing but means something else’

If translated into concrete terms, this statement could refer to an extremely diverse range of situations: discerning sarcasm, appreciating metaphor, picking up on malice, recognising a subtle sexual intention. These situations seem to share very little, but there is I would argue one core assumption. The premises of the assumption are:

A. ‘Explicit meaning’ is present (’someone says one thing’)

B. ‘Hidden meaning(s)’ are also present and co-occur with A. This can be anything as long as it is not identical to A (‘but means another’).

C. Consistent failure to grasp both ‘meanings’ together, across a range of social situations, may be an ASD indicator.

A is not the case in reality, and B is the case. Not all spoken statements have B. Some statements can be taken ‘literally’ and there is nothing hidden, nothing further there. Like, I think you look good tonight. Your hair smells like strawberries. Your nails hurt. Or maybe I would say that, presume a simplicity there because I can’t perceive B, the hidden meaning. Or perhaps there is a further assumption – that the explicit/obvious meaning is always already verbal, never not (in) the words. I can often tell people are lying because there is something about the charge of their movements, their words, their gestures, their stillnesses and silences that I can register, a sense of discord that i have to, even if I don’t want to, feel-with. I can’t tell if the sentence is A or B but maybe I can feel the contour of meaning beyond the verbal, like catch their eye and know exactly what’s going on but sometimes most of the time I don’t want to know, it just hurts to know, just hurts to know. Sometimes, when someone is trying to tell me they want to fuck me I shut down and I can’t hear a thing apart from every single thing in the room and beyond the room and the street corner and I dissolve into the sheets into the rolled down jeans into the rubbed out floor. I feel with the ceiling when someone means I want to fuck you but says we are the best of friends, I feel with the curtain the window the paint, the wind. Sometimes I can tell someone meant ‘something else’ when B has already become explicit, and how the fuck can I know whether I let it happen all along or whether I’m just a kid all over again, lost in the shreds of the world, always alone, never in meaningless silence and never on my own, never my ‘own’ self or my own person.

The only concern of the question is the ability to perceive ‘hidden meaning’ successfully. Because the question is not concerned with how an autistic may be successful in perceiving hidden meaning, the very definition of hidden meaning remains obscure. It does not distinguish between, say, cognitive and affective empathy which would appear to have different objects, or allow for the possibility that someone can routinely be vulnerable to specific situations and be oblivious to the pattern, while routinely good at picking up patterns of a different kind in communication.

I think that on the verbal level the ‘explicit meanings’ that we sometimes (or never or always) take literally are really reified, defunct metaphors, abandoned instruction manuals, dysfunctional information codes, piss poor poems, torn up receipts, rehearsed scripts, half-serious suicide notes and forgotten self-care exercises. Most people in my life – right up until I came to University and met some queers who broke that pattern – have tended to be very sure of their words. Allistics (or people who seem sure they share nothing with autism), even when unsure, tend to talk like ‘the right words’ given time, will come.

I get that. I want to find the right words too. But sometimes I have no words and I am unable to contain myself. I feel a movement, a vibration in my lips, a tick-like motion coming on. A non-verbal utterance in my language. My mouth threatens to move in a way that will maybe betray what is a meaning to you, hidden or explicit, that I won’t catch onto, I won’t understand. I can’t see myself from the outside. Can you? Will you think I’m less than a person, less than the person I was a few hours ago when we chatted so well and I seemed to have good elegant body language? Will you see something I do and read it as ‘explicit’ meaning, pertaining to some form of common sense? What if I say ‘do you love me’ again and again and again not letting you answer at all, will you see that I mean something else? That the hidden meaning is non-representational, that the silent word said means just that, a room sinking, a plane ascending, a dish screeching, the language of everything too ‘explicit’ to me and ‘hidden’ to you.

Or will you try to look ‘beyond’ a twitch, ‘interpret’ a bout of disturbing laughter, an incident of loud loud loud repetition that now means ‘too much’ for you but for me it is only a number  I have let go of because it just felt so good. Sometimes when I’m fucking extatic and I want to spin and spin and spin and spin and I know need to hurt myself to bring myself back to your ground and preempt the explicit meaning that you maybe read just so I don’t lose the few people I have spent my whole life trying to find.

/

You can take the test here. Results provide a breakdown of your score according to the four symptom areas. You are also able to compare your score to allistic and ASD averages. There results are presented according to gender; male and female are the only options.

I’ve taken the online test twice and my rounded average score is 168. Breakdown of my most recent test is: language 13, social relatedness 72, sensory/motor 46, circumscribed interests 37.

Glossary

AQ Autism Spectrum Quotient. Questionnaire developed by S. Baron-Cohen and others at Autism Research Centre, Cambridge UK. 2000.

DSM-IV-TR Fourth edition of Diagnostic and Statistical Manual of Mental Disorders, published by American Psychiatric Association (APA) in 1994. ‘Text revision’ (-TR) published in 2000.

ICD-10 The International Classification of Diseases, Tenth Edition. Published by World Health Organisation. 1994.

The full paper ‘The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R): A Scale to Assist the Diagnosis of Autism Spectrum Disorder in Adults: An International Validation Study’ can be accessed here.

guest post 1: jack smith

‘i sat with the kid i tutor, preverbal ASD, ADHD, mitochondrial disorders etc etc etc and less than that and he just laughed for hours. i gave him lunch and tried to play with him (blasting 70’s pop tunes at ear-piercing volume and me covering my ears like he does when he knows he done something wrong, screaming and he screams with joy) then the fire alarm goes off cause the sausages have burnt a little too much and we jump up he’s got his hands over his ears laughing while i try to open the windows and fan the smoke and i freak for a little cause i’m the responsible one who’s fucked up and then with him i laugh we laugh at me and it aint constuctive p-stage key stage xyz play so much as us looking into each others faces and i have no idea what he sees but he’s smiling an inch from my smile and they tell me “they say you shouldn’t use metaphors with autistics” but later when i move my finger close to his face and touch the cheek and scream like a smoke alarm he sits and giggles before ignoring me for an hour and walking about the house chuckling and if i try to get involved he pushes me away and i love it i love his joy.’

some notes on neurodiversity

don’t you think it’s the most glorious articulation of liberation politics ever?
i feel like  the ‘neurodiversity’ movement is not beyond criticism, if only because there is a multiplicity of movements there, as ever, with aims and principles varied and contradictory. But, even in the most liberal of its expressions, neurodiversity still asks for something incredible – a recognition of difference that is embodied, but not necessarily performed to the stage-directions of the diagnostic manuals that continuously reproduce the Autism Spectrum Disorder (ASD) identity categories as legally recognised disabilities, as disorders of neurological development still gathered under the umbrella of the disorders of the mind.
neurodiversity, in its worst and best iterations always seems to ‘demand the impossible’ – it’s a cliche but works right – to validate and invalidate the diagnosis, to secure a right to a fair assessment, to claim a belonging to a ‘spectrum’ that is fast losing its once binarist epistemology – from the ‘classical’ Autist to the more palatable ‘Aspie’ (DSM-V abandons Asperger’s Syndrome totally), fast-shedding its associations with the decidedly neurotypical culture of fascination with ‘savants’ (as distinct from geniuses proper because can’t ‘show their workings-out’, therefore receptacles of human nature’s mysterious workings, therefore automata) and ‘splinter skills’ (how many toothpicks have i just thrown in your face?). Even the ‘high functioning’ pole has gotten into the habit of reporting the failure to function at all. How long until the anomalous accounts connect into a culture of the appropriate degree of severity to warrant clinical attention? Perhaps, some advocates (brave, blogging, book-deal breaking Ted-talking parents) speculate, due to continuous official revisions, autism will no longer be a useful concept or word at all, its ‘original’ (Kanner’s strict, austere, beyond-all-reasonable-doubt) specificity stretched beyond recognition.
And yet – a classically stubborn thinker  – neurodiversity says ‘We are all Autistic’, whether we flap or bite or hiss or hit or shit ourselves sometimes or all of the time, whether we speak the language of normalcy with exceptional precision or with selective mutism or not at all, whether we had ‘behavioural’ problems at school or were rule-followers. Neurodiversity says, ‘We all’ share a neurotype that is not the one that makes it easier to do neoliberalism. Neurodiversity is not afraid of neuroscience, but wants a clean break from state psychiatry, and, perhaps more pressingly in an ‘age of de-institutionalization’ that has been associated with the proliferation of ASD diagnoses aka ‘the Autism Epidemic’, it wants at the very least a democratic regulation of state psychology and its ‘early intervention’ in childhood doxa.. But really I feel like even then that is just a temporary measure before neurodiversity will abolish every last one of those Applied Behaviour Analysis [NO HANDS!!!] programmes, of the governmental care-complexes that exploit the free labour of the (parent) mother to over-privilege the diagnosis and discipline and you guessed it punishment of the kids (citizen-identity-at-stake), which somehow coincides with the cuts to the services for adult Autistics (citizen-identity-failed) that may require them. After all, says neurodiversity, you still characterise the developmental disorder as ‘pervasive’, so why do you only seem to care about white middle-class cis boys which show the correct early signs of an ‘extreme male brain’?
Neurodiversity says, Autism is not a disease, but nor is it a Szaszian metaphor for how shit life is under the relentless and violent imposition of state forms. Autism is a disability, but only insofar as the disabling conditions persist. And yet, it seems Autism will exist after capitalism, whatever happens.
And that is because neurodiversity has conceptualised the possibility of Autism as joyous life. Beyond the ‘triad of impairments’ – communication, social interaction, ‘stereotypy’ – there is a way of being, a way of braining, a way of wor(l)ding the ‘intense world’ that is still being discovered by the ActuallyAutistic, still being written, typed up in-between individuals a lesson to be carefully, ‘pedantically’ planned that may one day just wreck all the oppressive, obsessive economies, (socio)ecologies, stereotypies, taxonomies and theories of mind.

poem 0

sweat caught in oil slick

shake colour colour thick

blocked up and spilled to the top and covered

with a hot pressure rice-cooker lid

shake shake pain between bone a trapped nerve

thick thick

tic tic

bone pain back bone

i smell the good food like oil that steals the air away

from subcutaneous blood

the hand hurts where the nerves hurt

the table moved onto my wrist as they collide

as i fell

onto a soft wrist with my hard wood bones

hands heavily propped

at 90 degrees bent i’m carrying the world

under my wooden lid

i hid and i cry without face just the head

and in my head i said

i miss you feeling my sadness

with your thick yellow thread

when i cry or don’t cry

yellow bird

 

trust exercise 1

I find it hard, and have always found it hard to read people. I know this because I am told that I’m flirting, I try too hard, come on too close or too strong. Or maybe I won’t remember your face and name, again and again.

Sometimes – that thickness, numbness – it works.  If I feel like I should tell someone something urgent, like when I have a secret and everyone is drinking and I need to tell you,  I can just pull you aside when I want to talk. I don’t feel anxious about the telling, all I know is that I want to talk, that it is you I want to talk to, that I want this right now.

But sometimes it kinda fucks me up. Sometimes I trust someone, first thing in the morning, last thing at night. I trust with my proximity. My feelings, my body. My secrets.

My feelings, most of the time, are strong and singular. If I feel something, I have trouble stepping back. I fight for it even when I shouldn’t. Sometimes it’s stupid. Sometimes it’s not.

Sometimes, I think scenario A is going on, but then I realise it’s been B all along, figure it out when I’m in too deep. I think you are my friend, but maybe you are not and you are trying to fuck – me – up – and I just let you and don’t say anything or do anything to stop it until it gets too close.

I have trouble saying no when something like that happens. I don’t know whether I am comfortable with something. If I have ‘mixed’ feelings, they all tend to be strong. Pulling me in lots of directions. I freeze, I shut up, paralysed.

It’s like shopping for food when anorexic. I stand in front of things and I don’t know how I feel, I don’t know what I want. I look at boxes of the same thing, reading the back although I know what the label will say already. I walk away with nothing, paralysed. When simple, strong feelings clash, I can’t tell them apart anymore.

When anorexic, food to me is animated. It has a kind of force field.  You could say it’s a ‘mental’ force field, for lack of a better word. Mental makes it sounds like there’s something not quite real about it, ‘airy-fairy’ as some philosophers like to put it. And yet all the same, it pulls me, it pushes. It has a power over me in the sense that it is manipulating me and I don’t even know it. I just feel the effects. Delayed, when it is too late.

Maybe an eating disorder is just a deeply unequal relation to food, where food controls you & you get more and more rigid, developing rules to protect yourself from its control. I fear food because I don’t know what it will do to me. I struggle to ‘predict’ its actions, I struggle to predict what it will ‘decide’ to do to me so  I try to make up for that in other ways, by setting more rules, by learning more facts.  I’m not obsessed, just Taking A Special Interest. I know that we – food and I, you and I – are already connecting, connected somehow but I just can’t see it. A radical machinic panpsychism is desire that works fastest at zero ‘theory of mind’.

People can be like food. I want to touch them, but I can’t. I want them so much but I can’t cos I’m scared to be played like a pack of cards so I chew and spit, but still, they cling onto my teeth, my nails, my fingers. They try to play me by biting my ears, by trying to kiss me first thing in the morning, or was it already last thing at night. Or was it instead a secret they told me that I took a bite of and spat out but I can still feel it in me, playing hop-scotch with me, churning me in the stomach, reading me like a book.