“He who is different from me does not impoverish me – he enriches me. Our unity is constituted in something higher than ourselves – in Man… For no man seeks to hear his own echo, or to find his reflection in the glass.”
– Antoine de Saint-Exupery (11)
We live in a world of increasing diversity and acceptance. With more efficient travel, greater connections and more robust discrimination laws, never before have so many opportunities been laid out for us to endeavor. Women can vote, same-sex couples can marry; we are on the cusp of entering a new era. Yet amongst all these historical, cultural and economical changes, what we often forget is the psychological. If we are to accept people for who they are, with respect and dignity, then why do we then choose to label them with terms such as ‘Asperger’s’ or ‘Autistic’ and to then reduce the paths they may be able to follow?
What is Neurodiversity?
‘My brain is a jewel. I am amazed with the mind that I have.’ – Muskie, diagnosed with Asperger Syndrome (2)
In the late 1990s, sociologist Judy Singer invented the term neurodiversity; a term that described conditions such as Autism and ADHD (5). This neurodiversity movement was born out of the autistic civil rights movement in the 1990s, and has grown rapidly thanks to the internet. The movement consisted mainly of members who had been diagnosed with Asperger’s, but did not wish to be ‘cured.’ This perspective, a step away from the mainstream method of categorization, led to books (12) and articles (13) being written, the launching of groups such as the Autism Self Advocacy Network, and a novel perspective of human thinking.
Neurodiversity is a term very similar to cultural or biological diversity; it takes into account the wide variety of human experiences, and respects people for their differences. Such an approach steps away from the medical model of viewing disability, instead focusing on the talents and perspective that each person can bring to the world. The implications of such a movement are widespread; the right to be treated with respect and dignity, regardless of the way one thinks.
What is Autism?
‘Autism is pervasive, colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence’ – autistic activist Jim Sinclair, 1993 (2)
Autism is found under Pervasive Developmental Disorders in the International Classification of Diseases-10. The criteria listed include impairment in social communication and social attachments (6). First used in 1910 by a Swiss Psychiatrist named Bleuler, it was transformed into its modern-day meaning in 1944 by the Austrian paediatrician Hans Asperger, when he published its first definition. The disorder has been termed Asperger’s Syndrome ever since (7).
Since its first use, the incidence of Autism has increased, leading to increased public attention both in the media and within the medical circle (1). This gradual increase has often led to the question: is this a disease of biology, or of society? Indeed, as our society has become more medicalized, Autism has entered into an era fixated with treatment and cure.
What is ‘normal’?
By continuing to medicalize a different way of looking at the world and of interacting with others, we must first define what it means to have a ‘normal’ perspective of such things.
This question brings to light the very fact that no one is normal. From the way we dress, to the jobs we undertake. From our hobbies to our distractions, our loves to our hates, our desires to our ventures, we are all different. How do we then take out our marking pen and draw a line between those who are ‘normal’ and those who are not? In fact, from an ‘autistic’ point of view, people who are non-autistic are easily distractible, obsessed with social interaction and suffer from profound deficits in attention to detail. The idea of normality changes with time, place, date and gender; what is normal here in the UK may well be considered unacceptable in Sub-Saharan Africa.
Rather than focusing on the normal, we should be focusing on individuality; on what each person can contribute to our society, and to themselves. This boundary between normality and disability is an artifact, a division drawn by man that merely reflects the values of the society in which he resides. For example, dyslexia is based upon our value to read sufficiently, something that would not have been as significant hundreds of years ago. So what does our medicalization of Autism tell us about ourselves?
As the modern era continues to be transformed by technology, perhaps what we build in the future –with the internet in our laps and a screen at every corner – will become a haven for those who have difficulty with eye contact and with body language. The diagnosis of Autism today may well be different from the diagnosis tomorrow.
Is Autism an identity or a disease?
In the absence of any biomarkers for diagnosing psychiatric illnesses, psychiatry often utilizes behavioural deviations instead (4). Using this argument, one could suggest that psychiatry may end up ignoring advantageous behaviors that are outside the ‘norm’ (4). What we may see instead are the difficulties that entrench a person. Rather than encouraging a young child to develop their interests and their hobbies, instead we may focus purely on their intense obsessions on the minutest details. Imagine what this means for a child. Instead of being seen as a building block of opportunities for ideas and growth, these children may instead see themselves as having un-breakable boundaries.
Yet, a label can have a lot of power. A diagnosis places upon the person a special status within society. It opens the doorway to specialist interventions and support from multiple sectors, helping the individual to succeed in certain areas of life that they may find more demanding than others.
There are clearly many things that children with Asperger’s have difficulty with; areas where they require intensive support and management. It is through these interventions that children may then be able to better integrate with society and feel valued. But the idea of finding a cure seems a step too far. As science continues to delve into our lives, we gradually begin to see everything with a different lens; that there must be pathology in everything that is different, and there must be an answer – a pill, an operation, a test.
But it is not all bad. The medical model has brought with it huge shifts within science – new drugs, new insights and a new life for many, many people. By medicalizing something, by using physiology to explain a condition, you are then able to destigmatize it. Thus, a person is no longer a schizophrenic, but instead suffers from schizophrenia – a disease entity of its own.
Whether or not such a viewpoint can be used for a diagnosis such as Autism is a difficult question to answer. For some, the explanation that Autism is an ‘atypical wiring of the brain’ (2) may help them to understand the difficulties that they face. Yet others may strongly identify with such a diagnosis, claiming that it is a gift that allows them to view the world through a different lens, giving them the opportunity to appreciate the depths of the human mind. They may choose to see themselves not as pathological, as wiring gone wrong, but as privileged beings who have been granted a gift of insight that others cannot fully appreciate.
Different vs Defective
As with many things in life, Autism falls on a spectrum. One could argue that by focusing on those who are high-functioning, and therefore able to have this debate, you are minimizing the true suffering of those who do not have this privilege. Indeed it can be argued that because it is on a spectrum, one should be careful not to blanket everyone with Autism as either having a ‘disability’ or simply being ‘high-functioning.’ The aim is to view Autism with a more open mind, rather than as something that requires a gene to be unlocked. This has received appreciation by the American Psychiatric Association, who recently converted the diagnoses of ‘Autism’ and ‘Aspergers’ into one simple diagnosis of ‘Autism Spectrum Disorder.’ Through the creation of this diagnosis, the emphasis has been placed on the idea that people do not fit into boxes, but lie upon a continual line that can encompass a wide range of behaviour.
Neurodiversity is the idea that neurological differences such as Autism are due to normal variation, rather than a sign of pathology. This point of view emphasises the fact that these people do not necessarily need to be ‘cured’ but helped and accommodated. If we look at the progression of science and the humanities, we see that the breakthroughs have been developed by minds that think differently; create links where others have drawn their blinds. If we are to grow as human beings, then this is the approach that is required; not just to grow scientifically, but also morally. Unfortunately, we are currently drawn towards questions of causation and cure – the link between Autism and MMR by Wakefield being just one example (8); an attempt to find blame, and ask the question: why is my child the way he/she is?
And to people with these conditions themselves, surely the idea of being part of a natural variation is much more appealing than being seen as something that is broken and needs to be ‘fixed.’ To describe someone as defective is to take away the essence of who that person is, and what they can bring to the world, to their family, to themselves.
Instead of creating a world focused on finding cures, on ridding the world of autism, we should be building the foundations to allow people to receive the support they deserve, to have their rights heard. Such efforts include early interventions for speech and behavior therapies, and building more accommodating home and work environments.
If we are to accept the fact that equality has been applied to race, religion, gender and sexual orientation, then why can it not be applied to people with different ways of thinking and interacting as well?
We are already seeing glimmers of this in our current society. Mark Haddon’s novel, The Curious Incident of the Dog in the Night-time, written from the point of view of a young boy with Autism, helps readers to transcend their lives and view the world from eyes that see differently, a mind that whirs at a different tone. This novel is studied by English students across the UK (9), and perhaps by encouraging these types of empathetic endeavours, rooted in the humanities rather than the sciences, a new way of thinking can be formed, where we can focus on acceptance rather than on cure.
‘An autistic child can only be helped if a serious attempt is made to see the world from his point of view.’ (10)
References
- Baker, D.L. 2006. Neurodiversity, neurological disability and the public sector: notes on the autism spectrum. Disability & Society. 21:15-29
- Ortega, F. The Cerebral Subject and the Challenge of Neurodiversity. 4:425-445
- Jaarsma, P., Welin, S. 2012. Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement. Health Care Analysis. 20:20-30
- Kapp, S.K., Fillespie-Lynch, K., Sherman, L.E., Hutman, T. Deficit, Difference, or Both? Autism and Neurodiversity. Develeopmental Psychology. 49:59-71
- Silberman, S. 2013. Neurodiversity reqires conventional thinking about brains [Online]. Available at: http://www.wired.com/2013/04/neurodiversity/ [Accessed: 1st January 2016]
- World Health Organisation. 2016. ICD-10: International statistical classification of diseases and related health problems. Geneva: World Health Organisation
- McGuinness, S. 2015. History of Autism [Online]. Available at: http://www.autismuk.com/home-page/history-of-autism/ [Accessed: 1st January 2016]
- Godlee, F., Smith, J., Marcovitch, H. 2011. Wakefield’s article linking MMR vaccine and autism was fraudulent. The British Medical Journal. 342:c7452
- 2013. Subject Content [Online]. Available at: http://www.aqa.org.uk/subjects/english/aqa-certificate/english-literature-8710/subject-content/why-choose [Accessed: 1st January 2016]
- Stanton, M. 2006. What is Neurodiversity? [Online]. Available at: https://mikestanton.wordpress.com/my-autism-pages/what-is-neurodiversity/ [Accessed: 1st January 2016]
- Evans, T. 2015. Counselling Skills for Becoming a Wiser Practitioner: Tools, Techniques and Reflections for Building Practice Wisdom. Jessica Kingsley Publishers.
- Silberman, S. 2015. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. Avery
- Solomon, A. 2008. The Autism Rights Movement [Online]. Available at: http://nymag.com/news/features/47225/ [Accessed: 28th January 2016]
Featured image:
Diversity by Séb
