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‘You’ve got autism because you like order and you do not look into my eyes’: Some reflections on understanding the label of ‘Autism Spectrum Disorder’ from a dishuman perspectiveAbstract The psychiatrists and health professionals who ‘updated’ the DSM-V in 2013 changed how ‘autism’ is meant to be interpreted. For example, Asperger’s Disorder merged into an overall collective of ‘Autism Spectrum Disorders’, rendering Asperger’s non-existent as a separate disorder. Yet, the term ‘Asperger’s’, ‘Autistic’ and ‘Autism’, in general, is used on a daily basis by people who have been diagnosed/labelled in this way over the course of their lives, or indeed, it is a term used by people to label people in stereotypical and prejudicial ways that leads to their marginalisation. It is it with this in mind that the author briefly reflects on his own experiences of being labelled with ‘Asperger’s’ or as being ‘autistic’ (a label he rejects), whilst thinking from a ‘dis/human’ perspective, a viewpoint that seeks to unpack and challenge the dominant concepts of what it means to be human in the 21st century. Whilst it is difficult to avoid being labelled in ways that lead to discrimination and rejection, a dishuman perspective offers a viewpoint against the narrow versions of what it means to be human, relating to how disability can trouble the notion of what it means to be human, and, indeed inform the very meaning of what it means to be human.Key Words: Learning disabilities, Dishuman, Labels, The Posthuman, AutismChanges to how we view ‘autism’ or not? The DSM-IV (from 1994 – 2013), published by the American Psychiatric Association, identified four separate pervasive developmental disorders, including Asperger’s Disorder. The DSM-V (2013 onwards), however, changed this to an umbrella term of ‘Autism Spectrum Disorders’ rather than having separate disorders, such as Asperger’s Disorder. Thus, technically, Asperger’s Disorder does not exist as a specific disorder, yet the term is regularly used on a day-to-day basis, whether it be for people who have been diagnosed in the past with Asperger’s, or by people who wish to apply the label to someone whose behaviour might be associated with the characteristics of Asperger’s Disorder. What is for sure is that there is still a strong medicalised feel to how Autism Spectrum Disorders may be understood. The DSM-V was developed by people who work in clinical settings, and who engaged in scientific field trials, with no focus on the wider social, cultural and political consequences of labelling someone with Autism Spectrum Disorders. In reference to Autism Spectrum Disorders, the DSM-V stated: The revised diagnosis (of Autism Spectrum Disorders) represents a new, more accurate, and medically and scientifically useful way of diagnosing individuals with autism-related disorders. (American Psychiatric Association, 2013). The terminology used relating to the ‘medical’, ‘scientific’ and ‘individual’ make it clear that the DSM-V continues to essentially see humans as a scientific problem rather than viewing society, and a human’s context, as the problem. Similarly, despite the DSM-V claiming that its view on Autism is a ‘better reflection of the state of knowledge about autism’, the ‘deficits’ of what Autism Spectrum Disorders represent seem to remain from times gone by:People with ASD tend to have communication deficits, such as responding inappropriately in conversations, misreading nonverbal interactions, or having difficulty building friendships appropriate to their age. In addition, people with ASD may be overly dependent on routines, highly sensitive to changes in their environment, or intensely focused on inappropriate items (American Psychiatric Association, 2013). Some authors have argued that there may be some advantage to be being diagnosed with, for instance, Asperger’s Disorder (when it ‘existed’), because the alternatives may be labels of ‘psychosis’ or ‘schizophrenia’ (Fitzpatrick, 2008). Meanwhile some authors have made it clear that it is society that struggles to accept ‘difference’, and therefore Autism may be repackaged as a form of deviancy, with Autism being deemed as something that needs to be ‘managed’ by ‘experts’ (Moloney, 2010). Indeed, without a diagnosis, deviations from norms may be interpreted as lazy and wrong behaviour (Ho, 2004), and people who are labelled with Autism are judged against ‘norms’, thus pathologising ‘difference’, which is what medical models of disability do (Ho, 2004; Mogensen and Mason, 2015, also see Hodge, 2005). It is clear that scientists (people who created the DSM-V) mostly understand Autistic Spectrum Disorders as something to do with how the brain works, ensuring that Autism is deemed as a medical problem, despite Autism being understood differently in different parts of the world (O’Dell et al, 2016). This highlights that the narrow, linear interpretation of Autism Spectrum Disorders (that is the DSM-V interpretation) is not in synch with the social, cultural and political influences that affect the creation of labels, and the contexts that people who are labelled with Autism Spectrum Disorders live in. Reflections on my labelled status: who is better at interpreting labels? The narrow minded and linear interpretation of what a label of ‘Autistic Spectrum Disorders’ might mean, and the medical gaze that still dominates this label’s interpretations, are matters that I have thought about a lot over recent years. During the course of my life, at different points, I have been labelled as ‘autistic’, or as somebody who has ‘Asperger’s’, yet I do not consider myself to have either, and I have not been formally diagnosed with these labels. People’s comments and reflections, however, have led to my own self-analysis, which sometimes makes me think that this is just about people’s misinformed interpretations; but sometimes I think to myself ‘do people have a good point to make?’ Am I really odd? Do I have poor social communication? Can I effectively interact with people? Do I rely too much on the routines and rules I set myself? Am I too sensitive? In Figure 1, I consider some of the ‘classic’ characteristics associated with Autism Spectrum Disorders, with most of them being applied to me at some point, alongside my response to each characteristic: Typical characteristics associated with Autism Spectrum Disorder which people have applied to meMy response to the characteristics Social Communication - Facial expressions- Tone of voice- Jokes and sarcasm- Vagueness- Abstract concepts- Eye gazing- I can’t read face expressions, but neither can you- I don’t like people shouting at me, do you? - Maybe you are not funny. Sarcasm is rude- I wouldn’t have a PhD if I was vague- Give me a chance to think- I’m busy, I haven’t got time to talkSocial Interaction- Appear to be insensitive - Seek out time alone when overloaded by other people- Not seek comfort from other people- Appear to behave ‘strangely’ or in a way thought to be socially inappropriate- Coming from the same person who said I was autistic?- Should I start worshipping God in a quiet church for some peace and quiet?- I find comfort in solving problems for myself- David Bowie and Prince Phillip spring to mindRepetitive Behaviours and Routines - Daily routine- Rules - Difficulties with change - I lead 11 modules at university, and I have a hand in different research projects, routine is needed- No rules, no sense of purpose- I’m a community psychologist, making a difference, making changes, is my jobHighly Focused Interests - Intense interests - Unusual interests - I read journal articles a lot to do my job - I like reading about the monarchy, but I’m a republican Sensory Sensitivity - Over sensitive- Under sensitive - Unbearable sounds - I care- I don’t care- People who talk with their mouth full of food – does anyone like that?Figure 1 – Examples and interpretations associated with my experiences of being labelled with ‘Autism Spectrum Disorders’ Whilst my comments seem blunt and sarcastic, it is nevertheless a reflection of how I feel when people make comments about my behaviour, and how they associate it with Autism Spectrum Disorders. Maybe I do not want to stare into people’s eyes because they might prolong me in boring conversation, or maybe instead of having a label of Autism, maybe I should be called arrogant and a snob for not wanting to engage with people. Whichever way you look at it, it does not seem so easy to label someone, and yet people do find it too easy to label someone unnecessarily. On the other hand, some people search for a diagnosis and celebrate labels of Autism Spectrum Disorder, and why should they not if it brings happiness to their lives? Thus, the simplicity and ease of labelling by professionals, or by people who simply need a justification for seemingly odd behaviour, does not account for the complex, messy and complicated people that we are, in how we interpret ourselves or how people interpret us. Dishuman perspective – challenging out of date perspectives on what it means to be human Figure 1 highlighted how people have viewed me from time to time, and how I view their judgements, which is in opposition to them. Hence, a binary is formed, and a tit-for-tat argument of ‘are you disabled versus are you non-disabled?’ emerges. Yet, are the people who judge me really wrong, and am I really right to reject their judgments? Maybe there is an element of truth on both sides, but does it really matter? Thinking about it from a ‘posthuman’ perspective, Braidotti (2006, 2013) argued that the traditional distinction between what we understand to be 'human' and, the 'posthuman', aims to deconstruct the inflexibility and motionlessness of the concept of what being ‘human’ means. This arguably means that the human can no longer be defined as a binary between human versus non-humans. For example, in one research project I facilitated, I worked with a group of men who discussed the meaning of ‘disability’ to them, and there were different views and different knowledges about what ‘disability’ meant to them (Richards, 2014). The men expressed different viewpoints and highlighted their diverse identities, but they also highlighted their shared identities, because they came to the project with a label of learning disabilities. Thus, the creaming off of who is, or is not, a person with learning disabilities in the way the DSM-V proposes, is not a reflection on how the men viewed themselves or each other. In this respect, the men challenged the label of learning disabilities, in the way I do about myself, in a way that can be considered ‘dishuman’. ‘Dishumanism’ is a concept that is continuing to develop (Goodley et al, 2014; Goodley et al, 2016a), and it emphasises that to think about what being ‘human’ means, we must see it through the existence of disability (Goodley and Runswick-Cole, 2014). Instead of being caught up in battles that binarise whether you have Autism or not, or whether you are disabled or not, and, despite disability and ‘humanity’ historically being in opposition to one another, a dishuman viewpoint considers that in fact the relationship between disability and humanity can be a productive relationship that can challenge norms, sameness and labels. Thus, a dishuman position can understand the ‘human’ with the presence of disability through theoretical, practical and political lenses (Goodley et al, 2014; Goodley et al, 2016b), which may break down the prickly barriers between people and society, and between what is disability or not.So do I have Autism Spectrum Disorder or not? Some people will read this paper and think that the author is in denial about being labelled with an Autism Spectrum Disorder, whilst others may feel offended because they are proud of their label and do not see it as a problem, but what is for sure is that how Autistic Spectrum Disorder is understood is not straightforward. This paper highlights that people are more complex than is implied by the labelling of the DSM V, and it is becoming more difficult to define what people are or are not as we move further into the 21st century. This perspective renders labels related to Autism Spectrum Disorder, to an extent, redundant, misapplied and misinterpreted in many respects. A dishuman perspective suggests that disability can inform what being human means, rather than us thinking about whether labels are right or wrong, which seems to me a positive and practical way of thinking about disability, humanity and Autism Spectrum Disorders.Acknowledgements The author would like to thank the organisers and participants of the Theorising Normalcy and the Mundane conference in 2016 at Manchester Metropolitan University for inspiring some of the thinking in this paper. I would like to thank Dr Tony Keating for our conversations on what makes us ‘odd’, or not, that led me to write this paper. Disclosure statement No potential conflict of interest was reported by the author.References American Psychiatric Association. (2013) Diagnostic and statistical manual of mental disorders. 5th ed., Arlington, VA: American Psychiatric Publishing. , R. (2006) ‘Posthuman, all too human towards a new process ontology’. Theory, Culture and Society, 23(7–8) pp. 197–208.Braidotti, R. (2013) The Posthuman. Cambridge: Polity.Fitzpatrick, M. (2008) Defeating autism: A damaging delusion. London: Routledge.Goodley, D., Lawthom, R. and Runswick-Cole, K. (2014) Posthuman disability studies. Subjectivity, 7(4), pp. 342–361.Goodley, D. and Runswick-Cole, K. (2016a) Becoming dishuman: thinking about the human through dis/ability. Discourse: Studies in the Cultural Politics of Education, 37(1), pp. 1-15.Goodley, D., Runswick-Cole, K. and Liddiard, K. (2016b) The DisHuman child. Discourse: Studies in the Cultural Politics of Education, 37(5), pp. 770-784. Ho, A. (2004) To be labelled, or not to be labelled: that is the question. British Journal of Learning, Disabilities, 32(1), pp. 86–92. Hodge, N. (2005) Re?ections on diagnosing autism spectrum disorders. Disability and Society, 20(3), pp. 345–349.Mogensen, L. and Mason, J. (2015) The meaning of a label for teenagers negotiating identity: experiences with autism spectrum disorder. Sociology of Health and Illness, 37(2), pp. 255–269.Moloney, P. (2010) How can a chord be weird if it expresses your soul? Some critical reflections on the diagnosis of Aspergers syndrome. Disability and Society, 25(2), pp. 135-148.O’Dell, L., Bertilsdotter Rosqvist, H., Ortega, F., Brownlow, C. and Orsini, M. (2016) Critical autism studies: exploring epistemic dialogues and intersections, challenging dominant understandings of autism. Disability and Society, 31(2), pp. 166-179.Richards, M. (2014) Confessions of a community psychology: the tale of a group of men challenging the perceptions of health promotion and learning difficulties. Unpublished PhD thesis, Manchester Metropolitan University, UK. ................
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