‘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 perspective

Abstract

The psychiatrists and health professionals who ‘updated’ the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders 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 terms ‘Asperger’s’, ‘autistic’ and ‘autism’, in general, are used on a daily basis by people who have been diagnosed/labelled in this way over the course of their lives, or indeed are used by people to label others in stereotypical and prejudicial ways that leads to their marginalisation. With this thought in mind, 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 twenty-first century. While 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.

Keywords:

• Learning disabilities
• dishuman
• labels
• posthuman
• autism

Changes to how we view ‘autism’ or not?

The fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (1994–2013), published by the American Psychiatric Association, identified four separate pervasive developmental disorders, including Asperger’s disorder. However, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V, 2013 onwards) changed this to an umbrella term of ‘autism spectrum disorders’ rather than having separate disorders, such as Asperger’s disorder. Thus, Asperger’s disorder technically 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 engage 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 [autism spectrum disorders] 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 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 (i.e. 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 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? Table 1 presents 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.

Table 1. Examples and interpretations associated with the author’s experiences of being labelled with ‘autism spectrum disorders’.

Typical characteristics associated with autism spectrum disorder which people have applied to the author	The author’s response to the characteristics
Social communication
– Facial expressions	– I can’t read face expressions, but neither can you
– Tone of voice	– I don’t like people shouting at me, do you?
– Jokes and sarcasm	– Maybe you are not funny. Sarcasm is rude
– Vagueness	– I wouldn’t have a PhD if I was vague
– Abstract concepts	– Give me a chance to think
– Eye gazing	– I’m busy, I haven’t got time to talk
Social interaction
– Appear to be insensitive	– Coming from the same person who said I was autistic?
– Seek out time alone when overloaded by other people	– Should I start worshipping God in a quiet church for some peace and quiet?
– Not seek comfort from other people	– I find comfort in solving problems for myself
– Appear to behave ‘strangely’ or in a way thought to be socially inappropriate	– David Bowie and Prince Phillip spring to mind
Repetitive behaviours and routines
– Daily routine	– I lead 11 modules at university, and I have a hand in different research projects, routine is needed
– Rules	– No rules, no sense of purpose
– Difficulties with change	– I’m a community psychologist; making a difference, making changes, is my job
Highly focused interests
– Intense interests	– I read journal articles a lot to do my job
– Unusual interests	– I like reading about the monarchy, but I’m a republican
Sensory sensitivity
– Over–sensitive	– I care
– Under–sensitive	– I don’t care
– Unbearable sounds	– People who talk with their mouth full of food – does anyone like that?

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. Perhaps I do not want to stare into people’s eyes because they might prolong me in boring conversation, or perhaps 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 contrary, 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 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

Table 1 highlights 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 emerges of ‘are you disabled versus are you non-disabled?’. Yet are the people who judge me really wrong, and am I really right to reject their judgements? Perhaps 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 ‘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 of how the men viewed themselves or each other. In this respect, the men challenged the label of learning disabilities, as I do about myself, in a way that can be considered ‘dishuman’. ‘Dishumanism’ is a concept that is continuing to develop (Goodley, Lawthom, and Runswick-Cole 2014; Goodley and Runswick-Cole 2016a), and it emphasises that to think about what being ‘human’ means we must see it through the existence of disability (Goodley, Lawthom, 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 which 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, Lawthom, and Runswick-Cole 2014; Goodley, Runswick-Cole, and Liddiard 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 article 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 article 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 twenty-first century. This perspective, to an extent, renders labels related to autism spectrum disorder 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.

Disclosure statement

No potential conflict of interest was reported by the author.

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, UK for inspiring some of the thinking in this article. The author would like to thank Dr Tony Keating for conversations on what makes us ‘odd’, or not, which led to this article.