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 1

I stare the chalk, down

I soak the wall, in

The music is too, loud

Too loud and the fragments of chalk sandpaper

Repeat

Too loud and scratch patterns of chalking paper

Swim tightly, crushing my teeth, lightly

Chalk powdering wet crumb-boulders

into my shrunken

lungs

until I

collapse

 

I give into the heat

and my hands go hard

Letting my blood go thick

I’m letting my people drown

On either side of

me

And I feel the veins hit me

in my chalk-ribbed rocking boat

My lips – sails

My legs – ropes

And in a thousand high chords

The strings of anxiety of my wrists

Are pulling a million invisible seams

Apart until I

collapse