What is the Neurodiversity Paradigm? Explaining Kuhn’s Theory of Paradigms Through Autism Advocacy Pt.1 The Medical Paradigm

Difficulty Level: 3rd Year Undergraduate, Masters, PhD

Introduction

Society has experienced a significant shift in attitude towards Autism from Autism as a medical disorder to Autism as a part of the Neurodiversity Paradigm. Such attitudes have seen the abandonment of adverts that argue that Autism ‘kidnaps’ children to celebrities embracing their identity such as Fern Brady. However, the media has paid little attention to what is meant by a ‘paradigm’. It is often used incorrectly and explained as merely a set of assumptions. In reality, paradigms refer to a particular philosophical understanding of how science works that was developed by Thomas Kuhn.

This series will explain the shift in understanding Autism through Kuhn’s theory of paradigms. Part one (this part) will explore the old medical paradigm and how Autism fitted into it. Part two will explore how Autism underwent a paradigm shift. Finally, part three will explore how well Kuhn’s theory can accommodate the changing attitudes towards Autism.

Background

Kuhn was a physicist, philosopher and historian in the 20^th Century. In 1962, he developed his theory of paradigms in his book The Structure of Scientific Revolutions.

The main focus of the book was to reject traditional understandings of scientific development. Until Kuhn’s work, science had been understood as comparable to an uncompleted jigsaw puzzle. The aim of science was to continue to discover new pieces to add to the puzzle until there was a complete picture. Once a correct piece was discovered, it could not be changed. However, Kuhn viewed science more as filling in a crossword, where scientific discoveries are dictated by a set of rules and assumptions.

From this theory, Kuhn created a new explanation for how science develops and with two main areas: paradigms and paradigm shifts. His theory will be illustrated through the example of Autism.

What is a Paradigm?

A key crutch of Kuhn’s theory is the concept of paradigms. Kuhn argued that scientists have a set of assumptions that allow them to communicate with one another. Another term Kuhn used for this was a ‘disciplinary matrix’. These sets of assumptions give scientists a set of fundamentals to work from but also created new problems for them to work on.

Paradigms also work as a way of validating science. What makes good or valid science is how well it fits to the paradigm being used. Science that does not match this paradigm is not held as a valid method of scientific inquiry and is either ignored or attacked. Because of this, all scientists are pulled into the paradigm.

Autism as Part of the Medical Paradigm

The first paradigm that Autism was understood through was the medical paradigm. There are a number of assumptions it holds:

There is only one, objective way for a person to be healthy.
Anyone who does not abide by this is ‘abnormal’ or ‘unhealthy’.
This creates inherent suffering for the individual where the life of the person is a tragedy.
Such suffering is a result of an inherent deficit that the person possesses.
The person should be treated in order for them to return to the ‘healthy standard’.

These assumptions were applied to Autism. As Autism began to be documented, scientists saw that Autism was a variation of what was traditionally considered normal. As such, scientists assumed that Autistic individuals were unhealthy. They thought of Autism as something that created inherent suffering for the person and a life of tragedy. This was inherent as a result of the person being Autistic. As such, they assumed that Autistic people should be treated in a way that returns them to a healthy standard.

These assumptions permeated every aspect of understanding Autism. Autism is traditionally defined in the DSM, a book dedicated to defining medical disorders. The DSM describes symptoms that a person ‘suffers’ from. These are described in terms of the person being deficient or unhealthy. This includes individuals having ‘obsessive interests’ or ‘struggling to have back and forth’ conversations.

Scientific Research into Autism Under the Medical Paradigm

The medical paradigm influenced how scientific research was planned. For example, the assumption of deficit led scientists to focusing on testing Autistic individuals for deficits. One example of this was looking to demonstrate that Autistic individuals couldn’t experience empathy. A study was thus designed where Autistics and non-Autistics were asked to read a set of non-Autistic facial expressions. Under the method used, it looked like non-Autistics could read facial expressions while Autistic people could. As such, it was concluded that Autistic individuals were deficient in empathy.

The paradigm also created ‘new puzzles’ to be ‘solved’. The paradigm emphasized the need for a cure due to the assumption that Autism inherently involved suffering. As such, science placed emphasis on finding the underlying biological basis for Autism so a cure could be found. Treatments were also generated with the aim of returning Autistic individuals to ‘normal’. In the 1960s, ABA therapy was developed. The aim of it was to punish Autistic individuals for behaviour that was not considered normal and train them to exhibit non-Autistic behaviour. It was believed that this could ‘cure’ Autistic individuals.

Autism and Public Perceptions

The medical paradigm had a significant impact on public perceptions of Autism. It was common for the media to portray Autism as a fate worse than death. For example, in 2007, the New York University Child Study Centre created a series of adverts that were designed to resemble ransom notes. In it, they portrayed that Autism stole children away from their parents. It conveyed the idea that Autism ‘stole normal children’ away from their parents and generated large amounts of suffering.

In 1998, Wakefield wrongly associated vaccines with an increased likelihood of children being Autistic. The media jumped on this. By 2008, it had created a widespread panic that scared parents into not getting their children vaccinated. The panic ended when it was discovered that data was falsified. However, the far deeper problem the panic conveyed was that having an Autistic child was far worse than having a child die of an illness. It promoted the assumption of the medical model that an Autistic child’s life will always be filled with suffering.

Autism Advocacy

The medical paradigm had a significant impact on Autism advocacy. Advocacy was predominantly done by parents who had Autistic children. These individuals, particularly mothers, were blamed for ‘giving their children Autism’ through their upbringing. The assumptions of such blaming emphasised the medical model by assuming that mothers could cause their children to have Autism in the same way they could cause a cold.

The medical model also caused the belief that Autistic people were not capable of advocacy due to their inherent deficits. As such, they had no authority to speak of their own conditions and weren’t taken seriously. Parents tried their best to emphasise that Autistic people needed to be included within society. However, they also talked about the burden that their Autistic children had on them, the suffering that their Autistic children went through, and that they hoped for a cure.

Beginning a Paradigm Shift: Kuhn on Anomalies

Kuhn identified that there are times when the assumptions that science uses change. He calls this a ‘paradigm shift’. Kuhn argued that one of the first steps toward a paradigm shift is an anomaly arising. This is a scientific result that cannot be easily explained by the current paradigm. Initially, the paradigm attempts to extend itself or dismiss the result as unscientific to accommodate these anomalies. However, as more and more anomalies arise, the limitations of the paradigm are revealed. It begins to be accepted that there needs to be a change in assumptions.

Science is thrown into crisis. Normal science stops and revolutionary science begins. During this phase, science is no longer focused on puzzle-solving or experiments to prove hypotheses. Instead, there is an intellectual revolution that requires philosophy to generate new assumptions so science can start moving forward again.

Initial Anomalies for the Medical Paradigm of Autism

One initial anomaly that arose for the medical paradigm of Autism was that more people had Autism than initially thought. At first, Autism was predominantly focused on individuals who could not communicate with their loved ones and were dependent on others for their care. However, it was noticed individuals who could have ‘normal lives’ (do well in education, get married) also exhibited some of the characteristics of autism, such as struggling to make eye contact or having a narrow interest.

Initially, the medical paradigm attempted to accommodate for these anomalies. New parts of the diagnosis were added with the explanation that individuals could be on the ‘milder end of the spectrum’ or have ‘mild Autism’. These people were still viewed as deficient, but less so than the traditional stereotype of an autistic person. Emphasis was placed on the ‘higher-functioning/lower-functioning’ distinction that was first created by Asperges in the 1940s. Autistics were split between those with high intelligence and poor social skills and those who could not look after themselves. These accommodations allowed the medical model to hang on a little longer.

The Medical Paradigm Struggling with Anomalies

Despite the medical models attempts to accommodate this new discovery, it still struggled. This was because the ability to have a clear distinction between the two was rapidly eroding. For example, individuals who were labelled as ‘low functioning’ as children because they lacked the ability to speak were assumed to be completely ‘deficient’. However, some of these children did go on and were able to speak later in life. Alternative communication devices were also developed. From this, it was clear that these individuals were intelligent. They just didn’t communicate in a way that the rest of society did. As such, the high/low functioning distinction could not be maintained.

These Autistic individuals also presented new challenges to the medical paradigm. It was common for ‘low functioning’ Autistics to be forced into ‘treatment options’ including ABA therapy. Such therapy was forced on those who could not communicate their experiences of the therapy. However, those who eventually could began conveying their overwhelming trauma from the experiences. Some methods went to the extent of using electrocution to punish Autistic individuals for their behaviours. To top this all off, these individuals also knew that ABA did not work: these individuals never became non-Autistic – they were merely traumatised into masking it.

The End of the Medical Paradigm?

The previous section begins to hint at the nail in the coffin for holding on to the medical model: autistic people began speaking about their experiences of Autism. This development was heavily aided by the internet where Autistic individuals found a safe space to discuss their characteristics on their own terms. From their lived experience, Autistic individuals were able to refute that their lives were filled with suffering or that they were inherently deficient.

One defining point was a speech delivered by Jim Sinclair. In a speech delivered to parents of Autistic children in 1993, Jim Sinclair argued that the tragedy model did not relate to his personal experience of being Autistic. Instead, it was a theory pushed onto Autistic people by society who felt Autistic people were a burden. When Sinclair suffered, it was the result of the oppressive attitudes of society towards Autistic people rather than anything inherent about Autism. He saw Autism as a way of being that could not be separated from him as a person.

Jim Sinclair is just one example of many Autistic people reporting that their experiences did not align with the tragedy narratives that had been painted by society. This broke the medical paradigm, thrusting science into its current crisis and scientific revolution.

Part Two Coming Soon

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References/ Further Reading for Series

Aberley, Paul. 1987. “The Concept of Oppression and the Development of a Social Theory of Disability.” Disability, Handicap and Society 2 (1): 5–19.

Bagatell, Nancy. 2010. “From Cure to Community: Transforming Notions of Autism.” Ethos 38 (1): 33–55.

Chapman, Robert. 2017. “Autism Isn’t Just A Medical Diagnosis — It’s A Political Identity.” Medium (blog). January 7, 2017. https://medium.com/@robchapman_90047/autism-isnt-just-a-medical-diagnosis-it-s-a-political-identity-4e877b3e4513.

———. 2019. “Neurodiversity Theory and Its Discontents: Autism, Schizophrenia and the Social Model of Disability.” In The Bloomsbury Companion to Philosophy of Psychiatry, edited by Serife Tekin and Robyn Bluhm. London: Bloomsbury Publishing Plc. http://ebookcentral.proquest.com/lib/bham/detail.action?docID=5589477.

Conine, Daniel E., Sarah C. Campau, and Abigail K. Petronelli. 2022. “LGBTQ+ Conversion Therapy and Applied Behavior Analysis: A Call to Action.” Journal of Applied Behavior Analysis 55 (1): 6–18. https://doi.org/10.1002/jaba.876.

Dein, Kalpana, and Marc Woodbury-Smith. 2010. “Asperger Syndrome and Criminal Behaviour.” Advances in Psychiatric Treatment 16 (1): 37–43. https://doi.org/10.1192/apt.bp.107.005082.

http://www.facebook.com/pages/The-Autistic-Self-Advocacy-Network/46477486501. 2011. “Get Involved – Autistic Self Advocacy Network.” Https://Autisticadvocacy.Org/ (blog). May 26, 2011. https://autisticadvocacy.org/get-involved/.

Kapp, Steven K., ed. 2020. Autistic Community and the Neurodiversity Movement: Stories from the Frontline. Singapore: Springer Singapore. https://doi.org/10.1007/978-981-13-8437-0.

Kay, Schriner, and Richard Scotch. 2001. “Disability and Institutional Change: A Human Variation Perspective on Overcoming Oppression.” Journal of Disability Policy Studies 12 (2).

Milton, Damian. 2018. “The Double Empathy Problem.” National Autistic Society. 2018. https://www.autism.org.uk/advice-and-guidance/professional-practice/double-empathy.

Mukhopadhyay, Tito Rajarshi. 2010. “Five Poems.” Disability Studies Quarterly 30 (1). https://doi.org/10.18061/dsq.v30i1.1192.

NIH. n.d. “Autism Spectrum Disorder.” National Institute of Mental Health (NIMH). Accessed May 17, 2023. https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd.

Owren, Thomas, and Trude Stenhammer. 2013. “Neurodiversity: Accepting Autistic Difference: Thomas Owren and Trude Stenhammer Explain Why a More Accepting Attitude towards ‘Autistic’ Needs and Behaviour May Contribute to Better Services.” Learning Disability Practice 16 (4): 32–37. https://doi.org/10.7748/ldp2013.05.16.4.32.e681.

Pellicano, Elizabeth, and Jacquiline den Houting. 2022. “Annual Research Review: Shifting from ‘Normal Science’ to Neurodiversity in Autism Science.” Journal of Child Psychology and Psychiatry 63 (4): 381–96. https://doi.org/10.1111/jcpp.13534.

shitborderlinesdo. n.d. “Shit Borderlines Do.” Tumblr. Tumblr (blog). Accessed April 28, 2023. https://shitborderlinesdo.tumblr.com/post/121319446214/psa-from-the-actual-coiner-of-neurodivergent.

Silberman, Steve. 2015. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. Penguin.

silentmiaow, dir. 2007. In My Language. https://www.youtube.com/watch?v=JnylM1hI2jc.

Sinclair, Jim. 2012. “Don’t Mourn for Us.” Autonomy 1 (1).

Singer, Judy. 2017. Neurodiversity: The Birth of an Idea. Judy Singer.

The Last Leg, dir. 2023. “There’s Not Enough Talk On How Weird Neurotypicals Are” Fern Brady Discusses Autism | The Last Leg. https://www.youtube.com/watch?v=HaqsScc32nQ.

The Living Philosophy, dir. 2021a. Thomas Kuhn — Paradigms, Incommensurability and Kuhn Loss. https://www.youtube.com/watch?v=uW5jCyJ2-YE.

———, dir. 2021b. The Structure of Scientific Revolutions – Thomas Kuhn. https://www.youtube.com/watch?v=C99X-Ye-GB0.

Then & Now, dir. 2020. Thomas Kuhn: The Structure of Scientific Revolutions. https://www.youtube.com/watch?v=L70T4pQv7P8.

“Thomas S. Kuhn | American Philosopher and Historian | Britannica.” n.d. Britanica. Accessed May 17, 2023. https://www.britannica.com/biography/Thomas-S-Kuhn.

Walker, Nick. 2013. “THROW AWAY THE MASTER’S TOOLS: LIBERATING OURSELVES FROM THE PATHOLOGY PARADIGM • NEUROQUEER.” 2013. https://neuroqueer.com/throw-away-the-masters-tools/.

———. 2014. “NEURODIVERSITY: SOME BASIC TERMS & DEFINITIONS • NEUROQUEER.” 2014. https://neuroqueer.com/neurodiversity-terms-and-definitions/.

———. 2016. “AUTISM & THE PATHOLOGY PARADIGM • NEUROQUEER.” 2016. https://neuroqueer.com/autism-and-the-pathology-paradigm/.