One that got away
Appeared in ed Murray, Coming Out Asperger: Diagnosis, Disclosure and Self-confidence, Jessica Kingsley Publishers, London.
For a few years now I have been tentatively checking with/disclosing to my growing number of autistic friends the possibility that I might myself belong somewhere on the autism spectrum, and I have been honoured by near universal acceptance. Yet there are reasons why I do not entirely feel I deserve the accolade: I am flexible, even slippery; I proceed insouciantly, with generally well-founded confidence; I am acceptable. A couple of years ago Jane Meyerding found, from the online group ANI-L (www.ani.ac) a useful category for me, “autistic cousin”. She also told me a story about how on becoming a Quaker and thus a pacifist William Penn sought advice about continuing to carry a sword, which as a male aristocrat he had always previously done. He was told he should wear his sword for as long as he could, ie as long as his conscience would let him. So I’ve divulged my highish AQ score to my main professional autism forum1; I’ve used it to indicate to my friends that I might be a bit odder than they thought; my husband and sons had earlier intimations and seem unperturbed. Now I’m going into print for the first time, now I have taken off the sword, will I be both more immediately vulnerable, and no longer a person of status?
There follows a narrative I have made of my life. I have made it the way it is to illustrate an argument. It could have been a completely different story, yet just as true. If as you read it, dear reader, you keep thinking, “Hang on! That could be me…” - think on! Perhaps your life could be told this way too?.
The story is about a person growing up soon after Kanner and Asperger first published, who has hardly ever had any problems getting her meanings across, whose presentation of self skills have almost always been sufficient unto the day, who has always had all the support she needed. It is a story about how easy it is to stay out of trouble if you’re good at what society likes, and about how that has the knock-on effect of building confidence, ie positive expectations of self-efficacy, without which the potential for exploration and discovery may be crippled. It also shows how even someone with massive confidence in some realms can lose it comprehensively in states of emotional meltdown with tiny apparent triggers. On those rare occasions when her meanings are taken amiss or not understood and an assumed smooth encounter is engulfed by mismatched expectations and negative assumptions, she can become a person incapable of communicating, of socialising, of thinking - and be strongly drawn never to expose herself to such risk again.
Most of the people Dinah knows who are on the autism spectrum tell her they regard her as “one of them”; the same applies to her normie friends. Most of the time she passes muster in either camp. This uncertainty is reflected in her scores on the Baron-Cohen parlour-games for identifying one’s position on various characteristics relevant, his findings suggest, both to “male-brainedness” and the diagnosis of autism spectrum conditions. On AQ test, (‘autism quotient’) SQ test (‘systemising quotient’) and EQ test (‘empathising quotient’) she scores between a typical male and a person likely to have an autism spectrum diagnosis [ref]. She also scores at just subclinical level retrospectively on Tony Attwood’s short questionnaire in his book on Asperger’s [ref]. (Just for good measure, she also has ring fingers longer than index fingers [ref], apparently another indication of both maleness and autistic disposition.)
Contrary to those indications, she scores at the top of the normal range in the remaining Baron-Cohen test, “reading the mind in the eyes”. She seems equally good at reading emotions in voices. Those skills may have contributed to sparing her from all but a tiny handful of the social catastrophes she would otherwise have experienced. However, those skills were probably not developed until she was well into her twenties, so we must look elsewhere for why Dinah escaped diagnosis and indeed why she should. The next sections of this chapter will summarise the evidence that she belongs to what is sometimes called “the broader phenotype of autism”. After that we shall look at reasons why in spite of that she has never attracted any formal dysfunctional label.
Being rather weird
On the beach with her family at 15months old, they were socialising with another young family. Parents were talking to each other, kids playing. Suddenly they realised Dinah was missing. Rather than playing with her peers she was off climbing precipitous rocks. Brought back to cries of relief, she went straight back up the rocks again. A fondess for climbing often led her up doorways, walls, cliffs, trees, even rooftops until she was in her early twenties.
Up a rock, 1954
Up a rock, 1964
Although generally easy going and good-natured, she would occasionally flare up very rapidly into extreme rage, misery, or panic. Things which struck her as grotesque were the main sources of panic. She can remember panic at her teddy bear’s lost eye, terror at carnival figures with giant papier mache heads, terror when her mother told her she had snake hips. Dolls horrified and repelled her with their distorted pinkly tinted heads and limbs and their rolling eyes. Her favourite object for years was a strip of fur which she called Scilly the snake.
“Come on Dinah, they aren’t that scary!”
It was presumably rage, or some desperate need for freedom, which made her fight so hard against the boys in playground wars between the sexes at primary school. It took four boys to catch her and keep her because she struggled so hard. Apart from jacks and yo-yos, that was the only playground game she ever “joined”. She remembers watching the other children doing “One Potato Two Potato Three Potato Four” with their fists and feeling completely unaware of the meaning of it all, yet having no inclination at that age to find out. In her late teens she read her way through the Opie collections of playground chants, etc [ref] which used to mean so little to her, and to which she was so little drawn as a child.
She did not initiate pretend games herself. She remembers being at a party for five or six year olds in which everybody was supposed to pass through a pretend guillotine of children holding their arms to make an arch while chanting fiercely about heads being chopped off: No way was little Dinah going to do that, however firmly pressed. Her toy knights she owned for their beauty, and she loved to line them up according to their colours and admire their gorgeous shininess: they were never used in mock fighting. She loved playing with bubbles in the bath. She loved to go through her mother’s drawer with coins and pins in. She loved spinning coins, but probably never for more than a few minutes at a time – often trying to get as many spinning at once as possible. She loved skimming stones, which she might do for an hour or more with or without company. Climbing trees was both intrinsically fun and had the desirable result of hiding her.
She learned lots of games of patience, some extremely challenging ones in her late teens, and also invented various card games to play with an imaginary opponent. She suspects a significant motivation in much of this behaviour was avoiding competitive situations in which she might lose. At the age of around ten someone she’d just met told her that it “stands out a mile that you’re scared to death of failure”; She was taken aback at the time but has come to realise the near truth and great importance for her of that statement. She believes that fear stems from the hideous futility of wasted time and effort. One of the expressions which always puzzzled her was “could try harder”: how could she? either she was trying with all her might or she was not trying at-all. Later on she got a bit braver and learnt several card games of moderate difficulty which she played against other people with pleasure. Building houses of cards was also a special favourite activity: Dinah was very good at this balancing act.
At about nine Dinah discovered she enjoyed something the other children regarded as torture, ie a “Chinese burn”: hold the wrist tightly and revolve hands in opposite directions pulling the skin with them. She went round the playground inviting people to engage with her by giving her Chinese burns. To this day she finds a light touch very uncomfortable, and is likely to startle violently at one if not expecting it - this has occasioned some inappropriate attributions of meaning in her life. Twice whilst watching tennis on television she has injured herself, once a cut foot, once a broken finger, without being aware she had until the match was over.
As a child Dinah had marked sensory issues around touch. She required to be tucked firmly in with a heavy eiderdown over her or she felt floaty and unsafe. She would not tolerate clothes tight around her neck, but insisted on things being done up tight around her waist or she felt loose; and nothing prickly! She still tends to cut out the labels from garments because they annoy her. She hated wearing shoes and went barefoot whenever possible (including going barefoot into London’s West End at the age of eighteen, why not?).
Barefoot babe looks at camera not photographer
At night the sound and feel of her blood rushing and pounding in her ears was intolerable, so she had a loudly ticking clock to drown it out, which intrusive sound she dealt with by fitting words of songs into its ticks until she fell asleep. Her clothes are chosen either because they are comfortable, cheap, easy to look after and visually acceptable, or because she finds them inherently beautiful – they are not chosen because of how she looks in them. She tried shaving her armpits once (yuck!), and may have tried lipstick twice (yuck again!). She has only been to a hairdresser two or three times in her adult life, her mother having cut her hair as a child. Instead she cuts her own hair, mainly ‘blind’, by feel. The results don’t usually get her into trouble.
The tactile qualities of various foods such as figs, tapioca, peach skins would provoke retching. Smells are also important to Dinah. Because she threw up as a toddler every time when offered her cod liver oil with added vits, she developed a pre-rickets condition by the age of three (caught in time). She still frequently retches when dealing with cat food, or still worse dog food, both the smell and the texture affect her badly. Pencils, paper, and the white glue paste in little tubs at primary school were all favourite munchies; she also discovered that young lime leaves, the nectar in fuchsias and honeysuckles, and the stalks of wild garlic flowers were delicious. At secondary school she more or less stopped eating the stationery but continued uninhibitedly to pluck and eat the wild treats.
Dinah used to do lots of looking at the world through her fingers, an activity which her mother discussed with her as giving one very interesting views of things. She would fiercely squeeze and press and work her eyeballs, loving the sensation and the patterns created; this she still does. She sucks the roof of her mouth. She has permanent creases around the base of each of her index fingers, from a lifetime of bending them hard away from her hands and enjoying the intense sensation in the knuckles. There is also hard skin on the inside of the first joint of her righthand index finger from a habit of rubbing it hard against its nextdoor finger. She likes to crick her neck first to the right and then to the left, feeling her head’s connection to her body. Most of these are easily hidden: the world need not know about them. She loved making spit bubbles on her hands but learned early on that this drew disgust from other people, so kept the habit private.
Despite the minor oddities described, most of Dinah’s behaviour both at school and at home was socially acceptable. Her pleasure in her own company and her tendency to long words and difficult questions were seen as evidence of a philosophical disposition. Her very early reading was greeted with joy not seen as dysfunctional, her memory for birthdays and phone numbers was seen as a desirable asset, her excellent spelling won her the school spelling bees. Only sibling relationships gave her any early training in expecting things sometimes to go wrong. When things did start to go wrong at secondary school Dinah progressively stopped trying to succeed academically, focussing some effort still on Art (at this school everyone could succeed at art), and lots of effort on staying out of trouble and not drawing attention to herself. Being identified as “A Problem” would have counted as being in the worst sort of trouble, of having completely failed. After years of constantly trying to “get it right” and succeeding, suddenly at secondary school doing so was no longer effortless. That might have crushed her. Instead, having been always good at hiding disapproved traits, Dinah now added challenge-avoidance and mirroring to her rather limited repertoire of social skills.
Trying to Get it Right
She wrote this poem in her early twenties:
Cut a flower, it does not bleed
The sap withdraws
So from your blade – your love –
Does my self turn
I build myself a house of glass
You look, and thinking you see me
You see yourself
You smile, murmur love
And call it union
That I would call
The coldest separation.
Her attempts to hide in this way through mirroring are subverted when the heat of her emotions glows through, sometimes with catastrophic results. Mostly such extreme intensely emotional upsets did not occur at school but at home, until part way through secondary school. During these phases Dinah becomes completely inarticulate (this remains true) sometimes for as much as an hour, during which she does not want human contact until her equilibrium has done some self-restoration. She experiences very brief very violent impulses when she loses her temper which typically dissolve fast into the tears described above. It may take her weeks after such an event to work out what was really going on in the situation which triggered it. It can be vital for Dinah to remove herself from other people at such times because her inability to explain anything then gets rich interpretation from them, and tends to generate responses likely to drive her further into inarticulate miserable helplessness and rage.
When she was eighteen, Dinah’s class teacher who had known her for seven years was displeased because she’d forgotten to request advance permission for some time off. The next day the teacher told her, in front of the class, that she had “told the class, the trouble with Dinah is, her world is just Dinah and The Others”. Dinah’s reaction to this at the time was a characteristic meltdown, floods of unstoppable tears and rapid escape from the presence of other people. But in retrospect she can see the teacher’s point. Here are a few more examples of what Dinah supposes was meant.
Not realising people identify with characters in books they read; she learnt this in her late twenties from someone who expressed surprise when Dinah said she never did.
Assuming that her fairly steadfast concern to contribute constructively to the current common interest is obvious, at least to her friends, without her having to maintain it with verbal cues and general “phatic communion” (this parallels stories of AS partners thinking that saying “I love you” once should be adequate) – correcting this requires vigilance on her part, it does not occur effortlessly.
Stating her views without remembering to remind listeners in some way that they are merely her views, and that she does believe other people have an equal right to their opinions (these propositions seem self-evident to her).
Not realising that one person’s expressed wants might make another person feel obliged to further those wants, whether or not they were personally disposed to do so, and without any authority relationship – remembering and allowing for this requires vigilance on her part, it does not occur effortlessly.
Not realising that typical people “strategically display emotions to influence other people’s behaviour” (Rieffe et al 2000,p.195) – Dinah thought until very recently it was a rarity, not the norm. Even if she had understood she was meant to develop this capacity, her feelings often burst forth faster than she can rein them in – which has been a key source of many social difficulties she has encountered, or created.
Dinah applied (as she still tends to) a rough all purpose Other-modelling indifferently to everyone. That included the assumption that we are all equal which meant for example that she treated teachers as the same as - not superior to - everyone else. Here is what Asperger (1944/1992) said about his case studies:
“They follow only their own wishes interest and spontaneous impulses, without considering restrictions or prescriptions imposed from outside…. They treat everyone as an equal as a matter of course and speak with a natural self-confidence. In their disobedience too their lack of respect is apparent. They do not show deliberate acts of cheek, but have a genuine defect in their understanding of the other person.” (p.81)
She strongly recognised herself in this passage. If rules strike her as arbitrary, unless she is contractually bound to obey them she will tend to ignore them. She reaches her own conclusions.
In her late twenties, probably thanks to having children, Dinah began to tune in to other people’s emotions directly, started to feel what they were feeling. Prior to that her feelings were only affected by other people’s through reason, and her sympathy was all-purpose and universalist, as above. Now the “on switch’” has been thrown, her empathy is unfortunately equally universal, hence she can’t cope eg with the kind of exposure to people’s pain which watching most television News entails.
Dinah was born before the statistical methods of 20th century psychology had established developmental timetables, generated the absurd idea that “normal” was desirable, and pathologised atypicality. At no point in her life has any catastrophe made her the responsibility of psychiatrists or psychologists. She has always been flexible about accepting changes and surprises – just no good with failing to “get it right”. Although she did lots of things as a child which are typical of children who these days attract a diagnosis of Asperger’s syndrome, so do most children to some extent. As Hutt et al observed in the early 60s [ref], and the diagnostic criteria confirm, the odd behaviours in autism are odd in quantity not quality. She probably did fewer of the other things that children do, but she did not do anything obsessively. She did not keep doing odd things which attracted unfavourable attention: she stopped skipping but kept smiling. So is Dinah “really a normie”? or is she just good at staying out of trouble? – or are those the same thing?
Dinah has repeatedly found that her monotropic disposition can be turned to good account. If she knows what the task is, and she believes the task is hers, then she sets to with a will! She is capable of getting far more done than most people if she sees cause. Even though we have painted a picture of fear-driven avoidance which she believes is perfectly correct, it is usually so succesful in keeping her away from the violently dreadful feelings that she very rarely experiences those. Hence in practice her general approach to life is one of bouncy confidence and get-up-and-go. But it follows that among the factors which have kept her away from diagnosis has been concealment, the opposite of the disclosure contained in this chapter and discussed elsewhere in this book. The mirroring technique clearly caused her some disquiet when she was running her social life with it. But it had important advantages: it kept open channels of communication with other people; it was a good way of learning about people and their feelings; it maintained her acceptability. Eventually the mirror melted away, and other people got right into her head and heart and stayed there – as they are meant to.
So, am I saying “I am an Aspie”? or even “I am someone with Asperger’s syndrome” – or not? If it is a simple categorial distinction the answer can’t be Yes and No – but it is. Tony Attwood says “It is recognised that the condition is on a seamless continuum that dissolves into the extreme end of the normal range. Inevitably, some children will be in a 'grey area'” 9p.145, 1993[?]. I am in that grey area. As Tom Berney remarks in his learned chapter, diagnosis is an attempt to impose a categorial distinction on a multidimensional reality. So each dimension offers a different point at which a boundary may be drawn, and it is the nature of the diagnositc criteria that each demarcation will have “acceptable” or “normal” on one side of the line and “unacceptable” or “abnormal” on the other. In the introduction to this book Mike Lesser and I have set out a proposed analysis of these dimensions: I am here going to apply that analysis to myself.
Depth of interest
Being steeply attention-tunnelled with all your awareness narrowly focussed can be a great way to learn about those objects which thus seize your interest. I have very rarely paid attention as wholeheartedly as that as far as I am aware. Certainly I have always been able to switch attention as required, albeit sometimes with discomfort. Being steeply attention-tunnelled means both that other people-ness may pass you by and that if other people do impinge it is likely to be in a loud, insistent, and potentially shocking manner. My own childhood was not dogged by people trying in vain to get my attention: I thought people were interesting and I was not demotivated by how they treated me. So although my ability to focus tightly is probably greater than most people’s, it is neither so great as to make me behave unacceptably nor so great as to give me any highly unusual capacities.
Breadth of focus
Sometimes I can slow myself down enough to home in on the details, to notice the light refracting through a dewdrop, to notice the riff running through a piece of music, to notice the tiny fungi among the grass blades. Small intense pleasures like these are intrinsically and immediately satisfying, but for me rare and shortlived. People whose interests tend always to be detail-focussed will tend to miss the bigger picture, and they will tend to behave in ways that other people find puzzling and unacceptable. The two main interests which have dominated my life - first Language, and then the relation between it and thinking – have been of immense scope. And those broad interests have not provoked behaviour which other people found puzzling or unacceptable.
Level of action threshold affects rate of cycling from one focal interest to another. When not driven by a topic of personal interest I tend to move rapidly on. Even when personally engaged I tend to switch back and forth between the leading interest and some other less demanding one. When not so engaged but needing to stay on task I self-stabilise in various inconspicuous ways which might be thought of as “hidden stims” – eg trying to divide the visual field into a number of rectangular sections which is a multiple of five. Although very inattentive in class, that was so well disguised that having what my mother called a “grasshopper mind” – and might get an ADHD label these days - never got me into trouble. It contributes to my making lots of connections, and not missing too much of what’s going on.
Rapidity of arousal
Distress arousal is so rapid and out of control that it shocks other people, disables social presentation, forces disclosure of my unacceptable face. The desire to avoid this has motivated mirroring techniques and reduced social contact. On specific occasions of meltdown time to regain composure is the only strategy that works, without that the situation worsens.
Overall available quantity of attention
This rarely seems problematic for me during waking hours. At times of meltdown processing capacities are overwhelmed and usable attention dried up. Loss of confidence more generally involves a retreat into whatever seems safe and thus a reduction in distributed attention. Most of the time high levels of confidence are maintained and with them plentiful attention, including extra-focal attention.
Capacity to maintain functional arousal outside the focal interest
At times of meltdown it stops being automatic and subjectively effortless to be aware of what’s going on outside my focal interest, including monitoring and adjusting to other people’s behaviours and reactions. Scarcity of attention also reduces this capacity, and may result either from extreme processing demands or from loss of will consequent on depression or loss of confidence.
Degree to which interests are socially approved
The environment I grew up in welcomed and respected my intellectual turn of mind and universalising egalitarianism, and accepted such oddities as I revealed: this certainly minimised disaster and strengthened confidence. My specific interest in language and its relation to thinking has propelled me through three university degrees. The egalitarianism fitted right into family traditions and translated into political activism, which has found me many comrades over the years. Even my keen interest in fungi of all sorts is socially acceptable!
Whether or not interests have included language early in development
This is key to being socially acceptable in one’s formative years, since learning to talk by a certain age tends to be seen as the sine qua non of proper development. I learnt to talk very early and appear to have rapidly acquired a large vocabulary, confidently and competently deployed. It was not until about the age of thirty that I realised there was more to my thinking than the attention-grabbing words with which I logic chopped: until then I missed out completely on the potential of visual thinking, and it remains poorly developed in me.
Anger and misery are disabling. Except in states of meltdown my temperament tends to be sunny and easy-going. Generally I have a confident and positive orientation which is probably significantly influenced by the fact that I only do things I expect to be good at; almost never try twice something which has gone wrong; have minimal specific expectations on any given occasion; repeatedly note the things and events which make me happy, seeking such in every situation. Vis-à-vis other people, I smile a lot and people tend to smile back.
Along every one of these dimensions a small difference in temperament or circumstances could have caused a major shift in behaviours. And that shift in turn would have meant I received the sort of negative message which tends to provoke total social shut-down in me. In declaring my status as an autistic cousin I am acknowledging kinship not just with what Ralph Smith calls “the shiny Aspies” but equally with those judged to be “low functioning”.
I was never enough of a problem as a child to be identified as needing special help or treatment. I hated drawing attention to myself unless I was perfectly certain how to proceed without ‘crashing’. Being noticed as problematic was the last thing in the world that I wanted, or anticipated – and I very rarely experienced or experience that. I’d rather just be able to get on with my own projects without interference. My main, usually succesful, project for at least a decade was not getting into trouble. I would have experienced being seen as a problem or worse still being given a dysfunction label as catastrophic. People only started worrying about me when I was sixteen, and thankfully only lightly. Of course there are lots of things I need help with, however reluctant I may be to accept that. But those gaps happen never to have precipitated the sort of crisis which would have meant my being seen as A Problem.
I did not have any awareness as I grew up of being personally distinctively different in contrast to other people who were more ‘the same’ than I was. I knew it was unusual to be able to spell everything and to be able to remember whole poems, birthdays, phone numbers. Other people were unusually good at different things. In the social milieu in which I grew up, being the ‘different’ person who was Dinah never meant being left out, never meant being treated as alien. In this setting, nobody would have seen the goal of making children “indistinguishable” as acceptable, never mind desirable. Later on in a wider social setting, potentially alienating differences from those around me emerged. Suddenly, I was not always welcome. I had to work out how to remain inconspicuous and continue being included; I had to work out new ways to avoid trouble.
My Christening – Godfather is PM
As I grew up, any difference I was aware of contributed to my confidence rather than undermining it. I knew I was a typical member of a distinguished family within an intellectual elite who could be eccentric to their hearts’ content. I knew that the weirdest people may have the best thoughts. I grew up in a society of people with similar attitudes and values, and scarcely ever met any rebuff as I proceeded toward adulthood. My behaviour was seen as typical of a proto-philosopher, not as deviant. Even outside this narrow sphere, my areas of interest have been socially valued.
I suspect most ‘autistic cousins’ as well as those more clearly on the spectrum, will have a similar sense of having grown up as members of an interesting and unusual family. With luck and care that can give them a sense of being special in a good way and also a sense of belonging. Having my interests valued and feeling I belong seem to me the most crucial beneficial features of my life which can be duplicated. If people’s interests and abilities include those which win social respect outside the family, then their confidence and motivation may be replenished rather than drained by encounters with social expectation. With these assets they may have enough bounce to survive many more of life’s blows without catastrophe.
As an adult I do not think of myself as able to move between two worlds, the NT world and the non-NT world. From where I am no margin is apparent in the flowing tide of humanity. I generally feel as happy and comfortable with my clearly NT friends as I do with my clearly autistic ones. That said, the lack of social demand which is usual in autistic relationships is very relaxing and agreeable for me. There are all sorts of situations in which I feel rather detached from what is going on, but that does not make me feel sad or uncomfortable. It is often a good thing to be a bit detached. Those situations probably most often involve typical people doing things they find more socially rewarding than I do.
As I get older and tireder the effort of maintaining a constantly appropriate social façade seems less and less worthwhile. So could I excuse my perhaps growing lack of social graces by referring to my autistic cousinhood? When I realise someone has been upset or put off by something I have done, should I ‘disclose’ that it’s ‘because I’m a bit of an Aspie’? That would be like claiming the right to use a wheelchair because one has occasionally twisted an ankle. I do not deserve any special consideration. However, within the world of autism studies I’d like to see more practitioners acknowledging they are as far from normal as I am and recognising their own kinship with the ‘subjects’ towards whom they tend to adopt such a superior stance. In that context disavowing any superior status is the key to developing respect and recognition of equal personhood.
As Simone Weil put it, “Our social personality, on which our sense of existence almost depends, is always and entirely exposed to every hazard…anything which diminishes or destroys our social prestige, our right to consideration, seems to impair or abolish our very essence” p88 Gateway to God from …and oppression?
If the protagonist of our story had had her social prestige destroyed, how different her story might have been. Instead of being a carefree member of an elite she might have been one of those embarrassing people who grunts, or greets strangers inappropriately; she might have completely given up “trying to get it right” beyond her narrow sphere of perfect control; she might have been an outcast with neither power nor influence.
The boundary which distinguishes the normal from the abnormal, wherever it applies, is always determined by the immediate previous history of the idea of normality. Every act of diagnosis and disclosure moves an individual to the officially unacceptable/abnormal side of the divide. This becomes part of the immediate history of the idea of normal and therefore has a potential impact on that boundary. Every instance of diagnosis in which the individual’s autistic profile is that little bit less sharply etched shifts the boundary imperceptibly towards the centre: now fewer people count as normal, though they may not know it yet. My image of this is of the great bowler hat shape of the Bell curve of normal statistical distribution. All round it diagnosticians are wielding their expertise, excising the atypical rim. But lo! As they do so, the typical centre shrinks, and a new rim appears.
That is not a process I want to contribute to. But there is another way the boundary can change: instead of cramping in towards a more and more tightly delimited norm, it could be a different sort of edge. It could be a distinction between value sets. The route towards social acceptability by current standards is a route towards disguise, concealment, and presentation: it’s the bullshit route. It places the highest value on presentation skills; it devalues everything else in the process. We do not have to agree that those are the most acceptable values. We might see that being the sort of person who attracts an autism spectrum diagnosis is likely to mean having an honourable and scrupulous disposition, and a concern for “getting it right” which includes a concern for truth and may confer tremendous capacity for work.
If people declare themselves unable to accept the traders’ values which underpin current norms, the process is different from that of authorised diagnosis. It is a process of acceptance rather than rejection, a process through which a cultural shift in what counts as acceptable may occur if enough socially acceptable people make this choice. If you would like to stand up and be counted as an autistic cousin yourself, please go and register your stance at www.autismandcomputing.org.uk.
1 Ie People attending the Durham conferences organised by Sunderland University’s Autism Research Unit
Dinah Murray and Mike Lesser: Autism and Computing
Dinah Murray, Mike Lesser and Wendy Lawson: Monotropism Hypothesis