Monotropism

Culture and Ignorance

By Dr Dinah Murray – UK

Note: this talk was later expanded into the book chapter Considering Adult Outcomes from a Societal Perspective in New Autism Research Developments (2007)

From the Autism2006 AWARES Conference:

Dr Dinah Murray (www.autismandcomputing.org.uk) is a worker, researcher, writer, campaigner, and teacher in the field of autism and its variants. She is a person-centred planning consultant based in North London, with years of hands-on experience with both children and (mainly) adults who have attracted autism spectrum diagnoses, and she has published extensively both as sole author and with Mike Lesser, and more recently also with Wendy Lawson. Dinah has written material and been a tutor for the Birmingham University distance education course and for the Internet based WebAutism course.  A critique by Murray, Lesser and Lawson of the diagnostic criteria appears in Autism, May 2005.  Dinah edited Coming Out Asperger: Diagnosis, Disclosure and Self-Confidence, published earlier this year by Jessica Kingsley, and co-wrote Getting IT with Ann Aspinall about using information technology to empower people with communication issues, also published by Jessica Kingsley this year. She is a consultant for the Reactive Colours project, funded by NESTA for 2005 and 2006.  Dinah is owner of the Posautive Youtube group at http://www.youtube.com/group/posautive.

Abstract:

Autism is defined by a set of diagnostic criteria that identify 
dysfunction in a culturally biassed manner which harmfully distorts  expectations and judgments.  It is argued that this   tends to have a  prejudicial impact on the education and quality of life of autistic  individuals, by causing inappropriately negative expectations of  their capacities.  Autism is more constructively viewed as not an  illness but an aspect of essential human diversity.  Particular  attention is given to issues around empathy.  Evidence of many  positive characteristics of the autistic disposition is discussed.

Full Paper:

Autism is currently identified solely by its dysfunctionality (see the diagnostic criteria). This focus on what is wrong means that autistic strengths are systematically ignored. This essay does not deny that autism can be hard to live with, but it focuses on the benefits of the autistic disposition, rather than the problems it may cause all concerned. The emphasis on dysfunction and the label of illness have primed public expectations of ‘a cure’.  The idea that this is a fundamental misunderstanding of autism underpins this essay.    

Of course, we need to connect with these young people who are so likely to be excluded, and of course we need to give them opportunities to experience and flourish in a shared world with us. But there is no illness to cure – rather there is a way of being, thinking and perceiving to accommodate. Even what gets referred to as ‘the seriously handicapping condition’ is not an illness – it is someone having a very difficult time because of the world they live in as much as because of who they are. It is important to be aware of that, or the world risks losing the distinctive concentration and commitment of the autistic disposition; the world risks exterminating a vital and productive strand of human diversity.  A eugenic steamroller is heading towards those atypical bumps.  

Lorna Wing, long identified with ‘the triad of impairments’ in autism, has indicated [1] that the triad is inadequate as a tool for picking out classes of person unambiguously and that a multidimensional model is essential to deal with actual diversity. A category is identified by at least two dimensions – two is enough in principle to identify a position on a matrix.  But reality and effective thinking both require more.  

If you think of anything purely as a category member, then ipso facto you will be ignoring other dimensions along which it may be distinguished – for example, its current position in space and time, or its causal history, or its colour, or the fact that it shines in a particular way when viewed from a particular angle.  It can be argued that cultural unanimity – often thought of as ‘common knowledge’ – is as much composed of mutual ignoring as anything else.  In the case of the cultural identification of autism, this conspiracy of ignorance has grave practical ramifications.

Once language has been incorporated into our early learning processes, it imposes its categorical imperatives on our thinking, without our even noticing. As I believe the French philosopher, Jean-François Lyotard, lightly put it: ‘Words are the housemaids of the mind’.  They play an important part in the conspiracy of cultural ignoring. There are some words in common use for describing autism today which are great for arousing the public will to part with large sums of money: words like ‘disease’, ‘plague’, ‘cancer’ and ‘epidemic, phrases like ‘genetically determined seriously handicapping condition”’.  From this perspective, it seems obvious that it must be a good thing to wipe out this horror!  No wonder autistic people sometimes feel they are always going to be wrong, whatever they do. The mind-set of the world in which they need to fit is determined by repeatedly affirmed false assumptions.  This essay aims to examine, and perhaps undermine, some of those assumptions.

However difficult autistic children may be, however hard it may sometimes be for families to cope, autism is not all bad.  Yet research results which find autistic strengths are persistently ignored or interpreted negatively. A characteristic example of this trend would be the interpretation of greater accuracy from the autistic subjects in an experiment as ‘a failure to apply top-down processing’.  Two sources for information about a range of these typical distortions are Mottron et al., 2006 [2] and a presentation [3] by the psychology professor and president of the Association for Psychological Science (formerly the American Psychological Society), Morton Gernsbacher, who is also the mother of an autistic child.  Given that researchers are working within a context determined by the value-laden and culturally biased diagnostic criteria, the interpretive bias which Mottron, Gernsbacher and colleagues expose is hardly surprising.

Applying the diagnostic criteria entails making assumptions about the typicality and desirability of certain behaviour patterns.  Being identified as autistic entails being identified as doing all sorts of deviant things in deviant ways.  How do we recognise the typical from which these behaviours deviate?  There are two ways of doing that, one being explicitly subjective and value-laden, ‘this seems typical [ergo fine] to me, this not…’. The other way of discriminating typicality from atypicality depends on deviation from a statistically derived norm.  In this latter case, the values in play derive from the idea that it is right and desirable to be as near the middle of the bell curve of normality as possible – ie, it is seen as desirable to be as much like everybody else as possible.  This is an inherently puzzling idea.  It also runs counter to what we know about essential diversity from the study of ecology – species need variety in order to prosper and flourish long-term.  Peter Allen and colleagues makes a formal (but easy to follow) case that human creativity and exploration are enhanced by synergy between individuals with varied properties [4].  Ballastexistenz’s typewriter analogy makes almost the same point: ‘Society would not be what it is if everyone in it were the same. The typewriter in my room would not work if it were made entirely of screws and nothing else.’ [5]  The strong genetic component in autism suggests naturally occurring diversity is at work when autistic children are born.  

The diagnostic criteria are enshrined in texts of great authority [6]. Their authority comes from the fact that they are official, written by a committee of experts, and in standard use among all medical practitioners.  In turn, those exclusively dysfunctional or disordered criteria for identifying autism, and the medical context within which that identification occurs, conspire to encourage ignoring along a number of dimensions.

In her book, Children under Stress (1973), Dr Sula Wolff has several pages dealing with autism.  She says: ‘Once the diagnosis has been established parents and teachers find it easier to decrease their demands for conformity, to educate the child by building on his particular interests and aptitudes and to insist on the essential requirements of social behaviour with less hostility.’ [7]  This humane and optimistic take on the role of diagnosis implies that people may typically enforce those social requirements in a way that seems hostile to the young person on the receiving end. 

A friend with autistic twins asked one of them when he was about eleven: ‘Why were you two always running away when you were little?’  His unhesitating answer was: ‘Because you hated us’. Even when we don’t think that’s what we’re doing, how does a child distinguish between hostility towards his or her behaviour (biting and climbing everything in this case) and hostility towards his or her very being?

‘Inappropriate behaviours’ tend to figure large in descriptions of autism.  This phrase presumes obvious or widely held attitudes towards what is and what is not appropriate.  Both the involuntary and thus uncontrolled communication of strong emotion, and direct attempts to communicate which do not draw from a standard repertoire of expressions, are likely to evoke negative reactions (This is wrong! This must be different!).  These negative reactions tend to exclude recognition or acknowledgement of legitimate issues and responses; they tend to ignore efforts to get things right already devoted to the communication process.  Such negative reactions fail to appreciate friendliness and good will, fail to notice fear, fail to identify meaning and fail to recognise justified emotions.  They pin everything on appearances.   Who is showing the empathy failure in such exchanges?   Take a look at this short video to see a perfect example of non-autistic empathy failure as a behaviourist teaches a little girl ‘how to sit down’: 

http://video.google.com/videoplay?docid=425217332743177340 (video no longer online)

Here, a desire for compliance with social norms and expectations involves ignoring obvious autistic joy and play, and equally ignoring obvious autistic fear.

Given how widely reported fear is among autistic people, we need to recognise that people who are constantly frightened and yet are carrying on with life and dealing with things are showing a lot of courage as well as determination.  Frightened or not, making the effort to perform so as to fit in is often exhausting and likely to be at the expense of other capacity  (see discussion of monotropism at www.autismandcomputing.org.uk and see Colored spoons… and social codes where there is a version of ‘spoon theory’ which also builds on the idea that there is a limited supply of processing resources).  

So what is seen as socially enabling by the carers/educators can actually be personally disabling.  This is about seeing autistic children as defective and focussing exclusively on fixing the defects. 

Kanner et al. (1972) found that what had been labelled ‘excessively narrow interests’ or ‘isolating obsessions’ were often built on later in life to become the foundations of employment and to make connections with other people.   If we see ‘uneven skills profile’ and ‘unusual interests’ in autism as inherently maladaptive, we may fail to accommodate those differences constructively.  We may fail to give the children opportunities to learn through observation, exploration and discovery, to learn in the ways that suit them best.  We may fail to give them access to ways they communicate best, and we may insist on the spoken word even when it is clearly effortful for the individual and ineffective as a communicative tool because of articulation or processing issues.  If we wish these children to flourish as well as fit in, then giving them time and tools to develop, share and explore their interests might in the long run inspire successful communication and be more productive than focussing on fixing their behaviour.  These are likely to be children with strong and persistent interests which don’t fit stereotypical expectations, and who may not consequently adapt their interests even when they are aware they don’t fit.  Knowing you don’t fit is neither sufficient for knowing what it is that makes you anomalous nor, if you do find that out, for adapting accordingly. 

‘Stubborn’, ‘obstinate’, ‘un-cooperative’, ‘non-compliant’, are often words used to describe autistic people, of all ages.  All those words assume that some other people have the right to tell you what to do, and that learning to do what other people tell you to do is an essential element of learning – what is sometimes called ‘learning to learn’ but is really ‘learning to be taught’.  From that perspective getting a child to sit down is a huge social achievement.  But it may not be the best way for autistic children to learn, they may do particularly well when they have opportunities to learn for themselves. [8] Also, doing what everyone else does is not necessarily a good thing:  we need explorers, see (Allen & McGlade cited in footnote 4) and we need non-conformists and individuals who will stand out against the crowd because they see things differently[9].  

Learning always to do what you are told can make you inappropriately compliant and potentially a passive victim of abuse of all sorts.

Anyway, the very characteristics which get called obstinate in one context will be called committed, dedicated, resolute and determined in another.  For some examples of obviously admirable autistic persistence and determination  – and imagination and creativity –  see some of the short videos in the Posautive Youtube group. [10]  As for compliance, in my observation, when a person – autistic or not, child or adult – can appreciate the point of a task and is invited to help carry out that task they will do so with good will – hopefully in a spirit of cooperation rather than compliance. 

In their follow-up report by on children they had seen and diagnosed, Kanner and colleagues at John Hopkins quote one employer saying of his autistic worker, that he is ‘outstandingly dependable, reliable, thorough, and thoughtful towards fellow workers.’ (Kanner, Rodriguez & Ashenden 1972 [11]) More recently, Hagner and Cooney’s study of fourteen ‘successfully employed individuals with autism’ found ‘…superlative evaluations of employees with autism… Individuals with autism clearly have skills and talents valuable to the business world in a wide variety of community jobs, and in the worksites studied, most were viewed not merely as successful but as outstanding employees.’ They go on to say: ‘Another unexpected finding, and one that tends to disconfirm to some degree a common stereotype about individuals with autism, was how social the employees were perceived to be.  Most employees had frequent, meaningful interactions with their co-workers and were regarded as friendly and sociable.’ pp 95-96  (Hagner & Cooney 2005) [12].

According to the journalist, Ker Than, ‘For autistic individuals, experience is more observed than lived, and the emotional undercurrents that govern so much of our human behaviour are inaccessible. They guess the mental states of others through explicit theorising, but the end result is a list -mechanical and impersonal – of actions, gestures and expressions void of motive, intent, or emotion.’ (2005) [13]

We naturally tend to assume that visible signs of emotional response always match our expectations of how certain emotions should be conveyed.  In the absence of such ‘appropriate’ outward expressions, we tend to assume a lack of inner feeling.  This is not a fair assumption to make vis-à-vis people who have issues with socially acceptable self-presentation, as everyone who attracts a diagnosis of autism must have. 

Please see this short video [14], ‘I Go Down’, of the autistic composer and thinker, David Andrews, for some direct evidence of autistic emotions. [15].  Music is a universally acceptable social form. Like many people, he finds music the most telling means of conveying feeling; it is direct evidence, also, of autistic creativity

We judge appropriateness by social norms and expectations.  For example, grinning widely when reporting or receiving terrible news is strongly culturally disfavoured in the West, but is considered normal in some cultures.  Some autistic people find that, under emotional stress, they uncontrollably display what A.M.Baggs’s brother has named ‘the dead hamster laugh’.  Here is what Baggs says about it: 

I smile when I have done something very wrong, and know it, and am horrified by what I have done; I am likely to smile when I know someone is dying nearby; I smile during all kinds of emergencies when someone has collapsed or is bleeding a lot; I smile when people close to me die, including animals; I smile during natural disasters, wars, genocides, and terrorist attacks; I smile while watching people physically attack each other; I smile while thinking about bad things about people …My mouth gets stuck, painfully so, smiling, or laughing, and I can’t do a thing to stop it… what people don’t realize, is that I’m not happy, and I don’t find any of these things remotely funny. While I am sitting there smiling or laughing, my actual feelings are intense disgust or horror. There is no pleasure here, and it would be really nice if people realised that this doesn’t make someone a monster. It’s actually a very basic human (and primate in general) reaction [ie ‘the nervous laugh’] that some people take further than others. [16] (my emphasis)

Autistic people are often accused of lacking empathy. Let’s think about the meaning of ’empathy’ and the meaning of ‘compassion’ and how these differ.  The idea of empathy was not much around in my childhood half way through the last century.  It entered common parlance in the 1960s from its use in a therapeutic context, particularly through the widely read work of the psychologist and therapist, Carl Rogers. According to Rogers, empathy is a process of ‘entering the private perceptual world of the other and becoming thoroughly at home in it. It involves being sensitive, moment to moment, to the changing felt meanings which flow in this other person, to the fear or rage or tenderness or confusion or whatever, that he/she is experiencing.’ (Rogers, 1980 [17]) It is unlikely that most discourse achieves this level of emotional depth.  Outside the therapeutic context, ’empathy’ tends to be used to describe direct person-to-person feeling responses – you feel bad, I feel bad; you feel good, I feel good, and vice versa – thus we understand how each other feels.  Friendly personal feedback loops can be created in which shared feelings are expressed to mutual recognition and affirmation.   It is about understanding Otherness by identifying Sameness.  Possibly, empathy has assumed more prominence and acquired such cultural value because societal changes have tended to remove other (non-logo) sources of a sense of common identity (see Bauman 2005[18]).  It is also perhaps part of the ‘therapising’ of daily life discussed in a Ballastexistenz blog [19]

The idea of compassion has been around at least as long as Buddhism has, ie, for around two and a half thousand years. The definition of compassion is: wanting others to be free from suffering.  In my experience and observation, when autistic people are aware of suffering in creatures of any kind, humans included, they tend to find it unbearable and passionately want it to end and if feasible will take steps towards avoiding that suffering being inflicted in future.   Is it necessary to experience empathy in order to feel compassion?  There seems no logical reason why, unless even understanding that other living things are capable of experiencing suffering depends on ‘entering’ their ‘private worlds’?  That is surely not the case: if I trip over my dog and he yelps, I know I’ve hurt him; if I make a sudden noise and my cat runs away I know he’s been frightened.   

I’m not doing any mind-reading or emotion swapping when I feel regret at the suffering I’ve caused.  I neither know nor wish to know how it felt for them.  Experiencing empathy along with compassion could make a person feel very bad indeed.  (Maybe that’s the underlying cause of the current trend of ‘compassion fatigue’?).

Anyway, the jury is still out on empathy in autism.  One research team recently concluded: ‘Although the people with Asperger’s syndrome in this study scored lower on the measures of cognitive empathy and theory of mind, they were no different from controls on one affective empathy scale of the IRI (empathic concern), and scored higher than controls on the other (personal distress). Therefore, we propose that the issue of empathy in AS should be revisited’ (Rogers et al. 2006 [20]).  

Recognising a feeling in another person must be easier if you are able to identify that feeling in yourself.  

Research by Ben Shalom and others demonstrates that physical emotional responses to stimuli are in the same range in the autistic and non-autistic groups they study.  The key difference between the diagnosed and non-diagnosed is that the former are significantly less likely to report a feeling associated with that measurable bodily sensation. [21]

Sometimes, you would think from what you hear about autism that autistic people are incapable of love.  But most people who love an autistic child or an autistic adult happily learn otherwise, however unconventionally that love may be manifest [22]. Concern, a wish to reduce any suffering, dedication, commitment, and joy in the presence of another person: these are constitutive of long-term love whether or not the person concerned is aware of experiencing feelings of a particular kind. [23]  

If empathy involves ‘tuning in’ to another’s feelings, then my observation – based on hundreds of hours of one-to-one with a variety of autistic adults at every level of apparent ability – is that autistic individuals do learn to do this. That is, they learn to pick up on basic positive and negative feelings as we all do, possibly on a similar timescale, possibly earlier, possibly later.  It may be that more fine-tuned emotional discrimination between different positive or negative feelings will emerge at a later age than average, if at-all. But that thumbs up/thumbs down polarity underlies all emotional states, and autistic people are not indifferent to this.  Fitting in and not fitting in are about being on the receiving end of those social meanings. Autistic individuals don’t fit because we tend not to accommodate them, even when they’re doing their darnedest to accommodate us.  To quote Mike Stanton’s personal tag: Let’s make autism a happy place.   

Acknowledgements

In general, I’d like to thank my many autistic friends for their patience and constructive support over the years.  As well as the people whose work is credited in the body of the text, I have to thank everyone in the autism hub  (www.autism-hub.co.uk) for their lively minds, hard work and effective communicating.  I must separately mention Camille Clark and Philip Ashton for their very useful research contributions to this essay in particular.  Sebastian Dern also deserves special thanks.

References