I’ve previously argued that the pathology paradigm is in crisis and that the neurodiversity paradigm is ready to replace the obsolete pathology paradigm.  I’ve argued that we’re in a period of paradigm shift.  And I stand by those words.  However, there one more thing that we have to do before the paradigms can shift: we have to agree on what the pathology and neurodiversity paradigms are.

Paradigms are grand theories that dictate the fundamental assumptions we use to approach some issue.  Classical, Newtonian mechanics are an example of one paradigm, while Einstein’s general theory of relativity is another.  Because paradigms define our basic assumptions, it’s difficult to find an objective way of debating which is best.  Simple terms might mean totally different things in each paradigm.  The paradigms are incommensurable, impossible to directly measure against one another.

Because paradigms cannot be measured against one another, we have to measure their ability to explain things instead.  When a paradigm starts failing to explain things, we can say that the paradigm is in crisis.  I don’t pretend to understand Newtonian mechanics or general relativity, but I’ve read that general relativity can explain some observations that left Newtonian mechanics stumped, like anomalies in the orbit of Mercury or the way that light from distant stars bends as they pass behind the Sun.  Thus, physicists switched from Newtonian mechanics to general relativity.  This is an example of a paradigm shift.

I’ve argued that there are now serious anomalies in the pathology paradigm.  Increasingly, we’re realizing that simply trying to eliminate divergent neurotypes and create typical neurological functioning in their place is not always the correct response.  Often, problems exist in our social contexts and environments: in such cases, we might have to change these environments instead of trying to change the individual.  (This isn’t just true for so-called “high functioning” autistic people: we might try to intervene to stop self-injurious behaviours by using functional behaviour assessment to identify and eliminate environmental causes of these behaviours.)  Furthermore, we’re starting to realize that the stigmatizing language of the pathology paradigm often causes harm.  Thus, the pathology paradigm is in crisis.

On the other hand, I’ve argued that the neurodiversity paradigm allows for interventions to change the environment, while at the same time preserving our ability to intervene to change the individual when such changes are appropriate.  I don’t think the neurodiversity paradigm has anomalies to anything like the extent that the pathology paradigm does.  Therefore, I’ve said that it’s time for a paradigm shift.

Unfortunately, while I think my argument is totally correct, it does depend upon a particular definition of the pathology and neurodiversity paradigms.  A quick scan of what has been written about these paradigms reveals a serious lack of any sort of agreement on their basic natures – in particular, there seems to be a great deal of confusion about what the neurodiversity paradigm means.  When there’s no agreement about the meaning of the paradigms, it follows that we won’t be able to agree about the problems that these paradigms suffer from.  We won’t be able to count up the anomalies and figure out which paradigm has fewer, because different definitions of the paradigms leave a different number of anomalies.

What Is the Neurodiversity Paradigm?

I’ve previously discussed the relationship between the neurodiversity paradigm and the social model of disability.  Contrary to what some people might think, the neurodiversity paradigm was actually introduced in reaction against some of the excesses of the social model, which argued that all disability was caused by society’s failure to accommodate impairments.  Judy Singer (2016), who coined the term “neurodiversity,” writes that:

“…it was a step too far to try to banish the existence of suffering altogether. Like all movements that try to provide a Grand Theory of Everything, the social model had its cultish, fundamentalist tendencies. Sometimes after disability research network meetings, I fumed to myself that we might as well have been Creationists given the dismissive attitude of the movement towards science, medicine, and sociobiology.”

Singer (1998/2016) therefore called for a “new synthesis” incorporating elements of both social constructivism and biological determinism, and rejecting the binary oppositions of the medical and social models of disability.  When Singer called for the existence of this new synthesis, she also made it clear that autistic people wanted “[d]isability services appropriate to their level of functioning on the spectrum.”

Thus, in Singer’s original conception, neurodiversity was not about denying the idea that there are real, medical and neurological differences in autistic people, nor denying the idea that these differences themselves cause suffering and that they might need to be addressed on those grounds.  Neurodiversity merely called attention to the value that can be found within neurodivergent minds and cautioned against the dangers of an automatic attempt to eliminate such diversity.

After Singer and the journalist Harvey Blume (1998) injected the idea of neurodiversity into popular discourse, the meaning of the concept became subject to reinterpretation and redefinition.  In this process, some autistic people might indeed have developed extremist definitions of neurodiversity.  However, I believe the autistic people who champion neurodiversity generally share Singer’s suspicion of unrestricted, untempered social constructivism.  Autistic people do have disabilities, and most of us face considerable challenges in our daily lives.  Thus, for us, the social model’s flaws are perhaps more obvious than they are in the case of physical disability.  We know that sometimes we must adopt interventions that strive to change the person, especially when dealing with co-occurring conditions and symptoms.

You can see this in the writing of Ari Ne’eman (2010), for example, who states that:

“Does this mean that we should not be engaged in trying to ameliorate the many challenges associated with being autistic? Of course not. What it does mean is that, first, we should target our efforts towards the real challenges we face, rather than towards a broader, nebulous concept of ‘curing’ autism that is offensive to many of the people that it aims to benefit. Second, we should in every instance consider the fact that it is often social barriers rather than disability itself that pose the problems we face. When a person faces anxiety, let us look for a method to address that challenge — but while the answer may end up being a medication or other medical solution, for many facing this challenge, social rather than medical approaches may be more effective.”

Ne’eman encourages readers to consider using social approaches, but clearly stops well short of forbidding medical approaches.  Emily Paige Ballou (2018) is even more explicit.  In a brilliant essay, Ballou openly criticizes the social model, arguing that:

“…even if society did a substantially better job at accommodating autistic people, being autistic would still markedly affect how I live, and will always leave me expending more effort than the non-autistic people around me just to get by. These experiences aren’t superficial, and they are never going away.”

Ballou therefore clarifies that:

“…neurodiversity critics need to understand that we who support neurodiversity aren’t confused about the fact of your child or loved one being really, truly disabled. We know there are non-speaking autistic people, epileptic autistic people, self-injuring autistic people. We know this because many of us are non-speaking, epileptic, and self-injuring autistic people.”

My own understanding of the neurodiversity paradigm – which is described in another post – is very much in keeping with these traditions.  I attempt to offer a more complete, fleshed-out model than one can find in these previous writings: I attempt to actually provide an explicit definition what the neurodiversity paradigm is.  But like these other writings, I never deny the reality of disability.  I recognize that social construction contributes to disability, but I state that disability is an interaction of the individual and their context.  I recognize that individual characteristics, as well as society, contribute to disability.  And while I direct attention to some of the dangers of attempting to change the individual, and to the value that can be found in human diversity, I leave changing the individual open as an option for interventions in appropriate circumstances.

Misunderstandings of the Paradigm

Unfortunately, people often don’t hear this when they hear the word “neurodiversity.”  They just hear the idea that human mental diversity is valuable.  They might therefore assume that neurodiversity is about denying the reality of disability or banning all attempts at intervention to change people.

This sort of misunderstanding is pervasive.  It’s not just something we hear from radical parents trying to find biomedical cures through complementary and alternative medicine, but it’s a misunderstanding that can be found across the autism world.  For example, when Jaarsma and Welin (2012) discuss the idea of neurodiversity in a well-cited scholarly journal article, their definition of neurodiversity seems very different from what we’ve encountered before.  Jaarsma and Welin write that:

“One aspect [of the neurodiversity claim] is that autism (or at least high-functioning autism) is not to be treated like a disability or a handicap but rather as a natural variation.”

However, the neurodiversity paradigm does not, as we have seen, deny the reality of disability.  It does not even attempt to argue that all this disability is a social construct!  Nevertheless, applying their understanding of neurodiversity, Jaarsma and Welin suggest that neurodiversity is incompatible with the provision of care:

“Considering the broad conception of neurodiversity, a paradox becomes clear. If neurodiversity is accepted by society as a special culture, the autists that need care may face a hard time getting it, because their state of being will be regarded as just a natural variation. The high-functioning autists that do not need care live happily in the knowledge that they are freed from the burden of having a deficit and may have a better life with non interference. But it may not be so good for low- functioning autists or even high-functioning autists that do need care.”

If even scholars are writing statements that so radically differ from the previous definitions of neurodiversity we’ve encountered, what sort of misunderstandings might we find in lay communities?

The Pathology Paradigm

I don’t want to spend as much time on the pathology paradigm as on the neurodiversity paradigm, because I think most of us have a better idea of what the pathology paradigm entails.  That being said, as I’ve written before, it’s important to distinguish contemporary clinical practice from the “pure” form of the pathology paradigm.  Contemporary practice is already filled with anomalous intrusions of the neurodiversity model.[1]

In its pure form, the pathology paradigm doesn’t quite state that all human variation apart from an ideal of “normality” is bad.  Rather, the pathology paradigm states that all human variation associated with “impairment” or “distress” can be considered to represent “disorders” and “deficits,” and that this variation should be eliminated.  Thus, while the pathology paradigm has no problem with variation like intellectual giftedness (which is not associated with impairment or distress), it always treats the variation it does dislike as pathology – as something to be eliminated, like a disease.

The neurodiversity paradigm is neither social constructivism nor biological determinism, but the pathology paradigm is simply biological determinism.[2]

The Path Forwards

For us to have a meaningful debate comparing the neurodiversity paradigm and the pathology paradigm, we need to agree on definitions of these paradigms.  I’ve offered some definitions here and in my other post on the neurodiversity paradigm.  Can others agree on the broad strokes of these outlines?  I hope so, because we won’t be able to make progress until we can agree on what we’re arguing about.

If you have thoughts, please comment below!

Footnotes

[1] But these limited intrusions aren’t sufficient, because they leave the core assumptions of the pathology paradigm intact, and they do little to eliminate the stigmatizing language of the paradigm.  The intrusions just make it a bit harder to perceive the pathology paradigm.

[2] I suppose that one possible source of social constructivism in the pure pathology paradigm might – arguably – be found within the ideas of “impairment” and “distress.”  “Impairment” and “distress” are context-dependent; something that is impairing in one context might not be impairing in another.  However, I don’t think we can attribute this insight to the pathology paradigm; the pathology paradigm seems to be concerned with trying to judge whether the individual is fundamentally “disordered” or not, not whether the individual is “disordered” in one context or not.  Thus, “impairment” and “distress” would seem to be judged context-independently in the pure form of the pathology paradigm: they are judged according to the principles of biological determinism.

And in any case, the pathology paradigm dictates that we must modify the individual, which doesn’t allow us the option of transforming the environment to eliminate the “distress” or “impairment.”

References

Ballou, E. P. (2018, February 6). What the neurodiversity movement does – and doesn’t – offer. Thinking Person’s Guide to Autism. Retrieved from http://www.thinkingautismguide.com/2018/02/what-neurodiversity-movement-doesand.html

Blume, H. (1998, September). Neurodiversity: On the neurological underpinnings of geekdom. The Atlantic. Retrieved from https://www.theatlantic.com/magazine/archive/1998/09/neurodiversity/305909/

Jaarsma, P., & Welin, S. (2012). Autism as a natural human variation: Reflections on the claims of the neurodiversity movement. Health Care Analysis, 20(1), 20–30. https://doi.org/10.1007/s10728-011-0169-9

Ne’eman, A. (2010). The future (and the past) of autism advocacy, or why the ASA’s magazine, The Advocate, wouldn’t publish this piece. Disability Studies Quarterly, 30(1). https://doi.org/10.18061/dsq.v30i1.1059

Singer, J. (2016). NeuroDiversity: The birth of an idea. Kindle edition. Original work published 1998