swimming in the heath

Yesterday R and I went for a swim in the Heath.

Muddy hills roll out their greens and yellows, reaking of summer. High heat, heavy air. Stringy, ethereal clouds tangle into a makeshift veil around a tall, smoking sun, providing little solace as we duck into a tunnelled alley to skip the heat. My trainers pounce happily on the soft rocky dirt, as hard rays of light smash through the hairy treetops. I get distracted by their gold-ness, their brightness and tesselate movement. I pretend to trap them under my feet. Slices of plant sustenance. Tree food, pure energy.

We reach the pond. The water is still, slickly green, completely opaque. There’s something sinister and scary about the water – without current there is no flow. ponds are loners and introverts. springs chatter, rivers whistle and talk. Ponds sulk, sap, rot and darken. The little bank is crowded, I panic about having nowhere to sit. The grass looks like weeds and nettles, poisonous and coarse. R asks if I want to get in the water, I complain, mumble and waste time. I think about monsters, amphibian creatures lurking beneath my feet, slipping between my toes. Is it there? Did you feel that? People are huddling by the water next to me, buzzing with conversation. We’re watching a string of ducks cut across the pond, their paddling feet sunk soundlessly into viridian jelly. Will it be cold? Will it taste like dead fish? Will it pierce my feet with abandoned glass if I let them stretch? I walk up on the wooden parapet and stare at the little lake, a puddle of unknown unknowns. R is hovering on the edge like a seagull scoping its lunch, excited to hit its element. I catch his eye and feel suddenly childlike, excited and silly. Ready? JUMP.

24-06-18 north london

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?

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.

notes on sensory exclusion: the two senses of public good

I think a reasonable way to begin is here, right now.  I am sitting in one of the research centres of my university. It is a space for research postgraduate students like me to do their work. It is one of the few places on campus where I am able to do so, but it is far from being somewhere I can do so best. Despite all the emphasis on the ‘facilities’ that are provided for our ‘community’, like a hot water tap and a couple of extra computers, the main aspect of study for me is sensory. What it feels like, literally, to work in a certain space.

Here, the lights are copious and bright, and the white light seems to reflect in depthless white sheets off the white smooth of rounded plastic tables. All the surfaces are smooth and depthless, just like the single-hue sculptures of Anish Kapoor, sharply and economically framed, but concave, convex without end.  The tabletop is brighter, more luminous than my computer screen. There seems to be no meaningful distance between the white light and me. There is no depth to the room. Everything is here, happening – to me – at the same time. I try to imagine a different sensory point of view to mine, what might it be like to work here in a different body and I cannot.

I just left a talk given by Nina Power. She gave a paper on the public, the state, protest, legal subjects. She considered a number of concepts like ‘public space’, ‘public opinion’, ‘public order’, and their relationship with the polis, police, policy. She considered the simultaneity of these fictions and functions. Negatively affected by the state that segregates those it exploits from its definition of ’the public’, negative publics emerge. Refugee and migrant movements, police violence movements, free education movements, Sisters Uncut. Nina talked about the way in which those excluded from the fictional ‘public’ (in the name of which the law acts as such, punishing or permitting X as it sees fit) – whether by virtue of the fact of their documentation and/or dissent – find themselves excluded on all counts. That is, temporally, spatially, politically. Collectivities are constituted in the negative. This is, in a way, the real public, or that pole of ‘the public’ with actual bodies.

The university has its own privatised spaces that are meant to be shared and common. I think of sensory exclusion as another mode of slicing the public into fantasies of the good of the public and the ghosts that are its threat. What kind of body can withstand the private, prestigious, card-access-only spaces of the (public) university? What is the individual body implied? The light is too bright for me means body unfit for the light, unfit for the room or in other words failing of test of fitness, of fitness for academia. I fail the reasonable test for access, I lose my membership to the room, my citizenship of the polis (Goodley et al:20). The university is not a tower but an ivory city-state, and to identify with the polis is to coincide with police, the law of the land, the law of the good proper.