Autism Advocacy and the Neurodiversity Paradigm: The Neurodiversity Paradigm, Kuhn and Autism Advocacy Part 3

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Series Introduction

Society has experienced a significant shift in its 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 and a whole new outlet for Autism advocacy. 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, paradigm refers 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 explored the old medical paradigm and how Autism fitted into it. Then, Part two explored how paradigm shifts occur and how Autism shifted to the Neurodiversity Paradigm. Part three (this part) will explore how the Neurodiversity Paradigm has changed how Autism is understood. Finally, part four will explore how well Kuhn’s theory can accommodate the changing attitudes towards Autism.

What is Autism? The Medical Paradigm Versus the Neurodiversity Paradigm

Under the medical paradigm, Autism was viewed as a disorder. That is to say, an Autistic individual is inherently deficient in a way that permanently inflicts suffering on the Autistic person. The medical paradigm held that it is something that needs to be cured and is desirable to separate from the identity of the Autistic person. The medical paradigm would argue that Autism can be described in a set of symptoms in the same way any other illness can be.

Autism is far different under the Neurodiversity Paradigm. It is not an inherent deficiency within the person but is one of many ways that an individual could perceive and experience the world. There are characteristics rather than symptoms that Autism is described through. The person cannot be separated from their Autism as Autism is a different neurotype. Due to the oppression Autistic people have suffered, it is also a political identity in the same way that being a woman is a political identity.

Kuhn and New Puzzles

Kuhn argued that an important reason for a paradigm shift is to offer scientists new puzzles to solve. Part of what causes the need for a paradigm shift is that the old paradigm no longer offers avenues for scientific research. The new paradigm needs to end the stagnation and keep science moving. However, it also needs to present new puzzles for scientists. There may be unknown things under the new paradigm. However, it presents scientists with the opportunity to gain knowledge by creating new hypotheses to test.

The New Puzzles for Autism Under the Neurodiversity Paradigm

Applying Kuhn’s analysis, the medical paradigm ran out of puzzles for science to solve. The Neurodiversity Paradigm offered new ways for science to move forward and created new puzzles for science to solve. An example of this is the oppression of Autistic individuals. The Neurodiversity Paradigm introduces the idea that society purposefully limits Autistic people due to its norms. Science can now study the mechanisms that contribute to this.

One example of studying the oppression Autistic people face is examining the use of ABA therapy. As mentioned previously, ABA therapy was used as a method to ‘cure’ Autistic individuals. However, under the Neurodiversity Paradigm, it is viewed as a tool for society to oppress Autistic individuals. Even removing the most abusive aspects of ABA such as giving electric shocks, it inherently revolves around the idea of making Autistic individuals behave in a ‘normal way’. It focuses on limiting an Autistic individual’s authentic representation and making them conform to the dominant neurotypes of society. Oppression of Autistic people is a new puzzle for academics to grasp.

There is also the development of Autistic culture. Under the medical model, any behavior or experience associated with being Autistic was viewed as bad and needed to be treated. However, under the Neurodiversity Paradigm, it is viewed as merely being different. Autistic behavior has begun to be a culture rather than something to be ashamed of. An example of this is a video posted by silentmiaow, where they demonstrate their stims. Historically, stims have been medicalized and treatments have aimed at stopping Autistic people from stimming. However, silentmiaow describes it as a language in the same way that someone else might speak French. This creates a culture for Autistic people that can be studied by academics.

What is Kuhn Loss?

Kuhn loss is where certain concepts that were meaningful in the previous paradigm become meaningless under the new paradigm. Let’s return to the rabbit-duck illusion in one of the previous blog posts:

When we look at the image and see the rabbit, it is meaningful to talk about the ears of the rabbit. However, when you change to viewing the image of the duck, it is no longer meaningful to talk about the ears as ducks don’t have ears. The loss of the ears would represent Kuhn loss. That is not to say that the lines that make up the ears disappear. Instead, they just take on a new meaning that does not involve the concept of ears.  

In the same way, when there is a change in paradigms, the scientific data does not change but there are aspects of the old paradigm that are lost.

What Was Lost from the Medical Paradigm?

When moving from the medical paradigm to the Neurodiversity paradigm, there were things that were lost. The most prominent of these was the need to cure and find an underlying cause for Autism. Under the medical paradigm, this was a key assumption applied to Autism. It was part of the assumptions of the paradigm that Autism needed to be cured because of the suffering Autistic individuals experienced. However, under the Neurodiversity Paradigm, this no longer makes sense. If there is natural variation among human brains, then there is no need to seek a cause for Autism beyond this explanation. Seeking an underlying cause makes as much sense as asking what causes someone to be neurotypical. There is also no demand for Autism to be treated.

The Impact of Neurodiversity in Designing Scientific Research and Autism Advocacy

The move to the Neurodiversity Paradigm has led to a change in how scientific research is designed and new reflections on old studies. An example of this is the change in approach to empathy. In part one it was mentioned that a study was designed to show that Autistic individuals were unable to empathise with others because they couldn’t read the facial expressions of non-Autistic individuals.

However, with the development of the Neurodiversity Paradigm, scientists realised there were a lot of assumptions that fuelled the study. It was designed with the presumption that Autistic people had the deficit and that they were the problem. To correct this, the study was expanded. Autistic people were asked to read the facial expressions of fellow Autistics and non-Autistics were asked to read expressions of Autistic people. What was found was that non-Autistic individuals also faced problems in reading Autistic facial expressions. At the same time, Autistic individuals could read each other’s facial expressions.

The Neurodiversity Paradigm thus led to designing science that could illustrate Autism as a communication difference rather than a deficit.

Autism Advocacy and Neurodiversity in the Media

As previously mentioned, the media would portray Autism as a tragedy and that Autism needed a cure. This included a set of adverts that portrayed Autism as kidnapping children from their parents.

In contrast, the Neurodiversity Paradigm has given celebrities the power to be open about their Autism within the media. It removes the fear that individuals are going to be discarded as disordered because they are inherently disordered. Instead, they can be accepted for who they are and also fight stigma that is still present within society.

An example of this is Fern Brady, an Autistic woman, who gave an interview to the Last Leg. In the interview, she compared Autistic people and non-Autistic people as having different operating systems like apple and android. She also discusses how weird non-Autistics can be in comparison to Autistic individuals. This changes the frame and emphasises that Autism is merely a difference, not a deficit. Such discussions would not be possible without a move to the Neurodiversity Paradigm.

Autism Advocacy

As mentioned previously, before the Neurodiversity Paradigm, Autism advocacy was done by the parents of Autistic individuals. This was because it was believed that Autistic individuals were unable to advocate for themselves. Parents of Autistic individuals thus believed they were in the best place to advocate for their children. However, Autistic individuals have challenged this through the Neurodiversity Paradigm. It has been held that Autistic individuals are the best individuals to advocate for Autistic individuals. This is because they have the lived experience of being Autistic and being oppressed within society.

Clashes in Modern and Traditional Autism Advocacy

Modern and traditional advocacy agree that accommodations should be made to include Autistic individuals within society. Autistic individuals should be able to have access to the support they need in order to be included in society. However, traditional advocacy argued that this should be done despite Autistic individuals being Autistic. Traditional advocates believed that Autism was a tragedy that needed to be treated. Accommodations should be made but in an ideal world they would want their child to be ‘treated’. In contrast, Autistic advocates argue that they should not be treated as Autism is a difference not a disorder. However, they are oppressed because they don’t fit the dominant neurotype of society. Through the social model, they expect society to change because it is society that is the problem, not the Autistic person.

This also impacted on which organisations should be able to advocate for Autistic individuals. Organisations such as Autism Speaks and Cure Autism now have been denounced attempting to advocate from the point of view of parents with Autistic children rather than Autistic individuals themselves. Autistic advocates have begun to set up organisations that do reflect their lived experience and the Neurodiversity model, such as the Autistic Self Advocacy Network.

The Role of the Internet in Autism Advocacy

It is also important to note the role that the internet has played in Autism advocacy. This is an example of the social model in action. Historically, to advocate and create communities, everything had to be done in person. There would be in-person meetings and conferences. However, this created problems for some Autistic individuals who had communication differences and struggled in spaces made for dominant neurotypes. The internet allowed Autistic individuals to create spaces better suited to them. As such, Autistic people used online spaces to create communities and further their messages. This particularly took place on chat and blogging websites such as tumbler and reddit.

Kuhn’s Incommensurability of Paradigms

Kuhn believed that paradigms were incommensurable. This is where the assumptions of one paradigm clash with another and are not compatible. To understand this, let us return to the rabbit-duck illusion. When you look at the rabbit-duck illusion, you cannot see both the rabbit and the duck at the same time. This is because you must completely change your assumptions in order to see them. They are not compatible together.

In the same way, Kuhn believed that paradigms were incommensurable. Once you undergo a paradigm shift, you cannot hold on to the old paradigm at the same time. You must change the fundamental assumptions to understand it.

He also believed that there were some people who would never be able to change paradigms. These people were so entrenched in the paradigm that they couldn’t see the assumptions that underpin it. These individuals would not change despite others doing so. However, those less entrenched in the paradigm would. As more and more people transfer to the new paradigm, the old paradigm dies with those who held on to it.

Incommensurability Between the Medical and Neurodiversity Paradigms Plus Its Impact on Autism Advocacy

From Kuhn’s argument, he would hold that the medical paradigm and the Neurodiversity Paradigm are incommensurable. This is something Nick Walker also argues. To truly believe in the Neurodiversity Paradigm, you have to completely rid yourself of the assumptions of the medical paradigm. For example, the medical paradigm holds that there is a singular way to be healthy. The Neurodiversity Paradigm holds that there is natural variation among brains and that ‘a singular way to be healthy’ is fictional. On the surface, it would appear that both of these cannot be accepted at the same time.

The incommensurability of paradigms can be seen between the interactions between Autistic advocates, researchers and non-Autistic Autism advocates. These have been particularly contentious, particularly with the former arguing against cures and the latter being for them. Under Kuhn’s theory, eventually most these people will die out and most people will transfer to the Neurodiversity Paradigm. However, as will be discussed in the next section, this is not guaranteed.

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You can find the full list of reference for the series here.

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